By DAVID CONDOS <a href="https://www.hppr.org/hppr-news/2022-05-25/a-hole-in-the-ground-and-other-quirky-curiosities-mean-money-and-pride-for-small-kansas-towns">Kansas News Service</a>

CAWKER CITY, Kansas — One day in 1973, The Wall Street Journal published a review of Kansas tourist attractions.

“Kansas is trying to promote tourism,” the Journal noted, “but it really doesn’t have a heck of a lot to promote.”

The
 column singled out the godfathers of Kansas roadside tourism — the 
World’s Largest Ball of Twine in Cawker City, the World’s Largest 
Hand-Dug Well in Greensburg and the folk art town of Lucas — for 
particular ridicule, with pause breaks in the spots where the Journal 
expected its audience to chuckle at Kansas’ expense.

Local 
newspapers from Salina to Lawrence to Atchison responded swiftly and 
defensively, standing up for the state’s quirky attractions and the 
simpler-times spirit they represent.

“If modern Kansas only had 
some outdoor privies,” the Atchison Daily Globe quipped, “we would 
recommend a use for this Wall Street Journal.”

As it happens, the town of Elk Falls in southeast Kansas bills itself as the state’s <a href="http://elkfallsouthousetour.com/" target="_blank">outhouse capital</a> and celebrates its collection of privies with an annual festival.

No
 matter how kitschy, these offbeat attractions can offer a boost to 
rural economies. Dozens of Kansas towns take advantage of their 
locations to tempt travelers to spend a few dollars while driving 
through “flyover country,” often on their way to somewhere more 
glamorous.

Just as importantly, the sites give communities 
something to rally around and a feeling that their hometown — no matter 
how overlooked — deserves a nod from the outside world.

“We hear 
that, ‘Oh, it’s just a hole in the ground,’” said Stacy Barnes with a 
laugh. She’s the city administrator for the town with the World’s 
Largest Hand-Dug Well. “Well, it’s true. But … it is ours.”

For rural areas that have seen a steady exodus of residents since their <a href="https://ipsr.ku.edu/ksdata/ksah/population/popmax.pdf" target="_blank">populations peaked</a>
 more than a century ago, finding some way to bring in more revenue is a
 matter of survival. And for better or worse, Kansas isn’t blessed with 
the mountains or beaches that seem to effortlessly lure crowds of 
tourists to other places.

So if small towns around here want to 
stand out, they’ve had to come up with their own larger-than-life 
wonders to put themselves on the map.

Like a cowboy boot <a href="https://www.roadsideamerica.com/tip/16027" target="_blank">spur</a> big enough to drive a semi-truck through (Abilene). An <a href="https://www.roadsideamerica.com/story/9183" target="_blank">easel</a> taller than an eight-story building (Goodland). A <a href="https://www.travelks.com/listing/worlds-largest-travel-plate/18782/" target="_blank">souvenir travel plate</a> made from a 14-foot satellite dish (Lucas).

Or a ball of farmer’s twine the size of a shuttle bus.

“You do what you can with what you have,” ball caretaker Linda Clover said. “And we have a ball of twine.”

Despite decades of doubters 
and the Wall Street Journal’s best efforts, the quirky attractions 
dotting Kansas roadsides may still have the last laugh.

A sign next to the <a href="https://www.roadsideamerica.com/story/8543" target="_blank">Ball of Twine</a>
 today credits that Journal article with single-handedly elevating the 
site’s fame nationwide, setting off waves of out-of-state visitors that 
now stream through this tiny north-central Kansas town by the thousands 
each year.

Along the side of the highway that leads into Cawker City’s 
three-block downtown, the giant ball is impossible to miss. From its 
hilltop shrine next to an auto repair shop, it glows in the afternoon 
sun like an oatmeal-colored lighthouse beam beckoning travelers to drop 
anchor.

A retired school librarian who grew up in the next town, 
Clover took on the mantle of caring for Cawker City’s pride and joy more
 than two decades ago. She now lives close enough to the ball that, when
 she sees people stop by, she usually pops over with one of her twine 
spools and shows the visitors how to tie on their own piece.

“I call myself the crazy twine lady,” Clover said. “I’m the belle of the ball.”

This
 ball got rolling back in 1953 when a local farmer, Frank Stoeber, 
became sick of tripping over extra bits of twine leftover from tying up 
his hay bales. So he began winding those scraps into a ball. Soon, that 
ball grew big enough to fill a barn door.

A few years later, Cawker City invited Stoeber to haul the ball into 
town to show it off in a parade celebrating Kansas’ centennial. And 
thus, one of the most famous tourist attractions in Kansas was born.

While the population of Cawker City has shrunk by <a href="https://www.ipsr.ku.edu/ksdata/ksah/population/2pop33.pdf" target="_blank">more than one-third</a> since that ridicule from The Wall Street Journal, the Ball of Twine’s size has ballooned along with its fame.

It
 now weighs north of 27,000 pounds, more than five Ford F-150 pickup 
trucks. And if you unraveled its 8.5 million feet of coiled twine, it 
would stretch from Cawker City, past New York’s Wall Street and all the 
way to the eastern tip of Long Island.

A glance through the ball’s guestbook (yes, the Ball of Twine has its
 own guestbook) shows dozens of visitors from as far away as Oregon, 
Florida and Italy. In just a few days.

During the peak summer season, Clover said, it brings in around 200 travelers a day — in a town of only 457 residents.

“I
 have had people so excited … they could hardly wait for the car to stop
 so they could come and see it,” Clover said. “And they keep coming.”

It’s a similar story at the <a href="https://www.roadsideamerica.com/story/2878" target="_blank">World’s Largest Hand-Dug Well</a>, which last year drew <a href="https://www.facebook.com/photo.php?fbid=319017703564408&amp;set=pb.100063685415500.-2207520000..&amp;type=3" target="_blank">10,455 visitors</a>
 from all 50 states and 14 countries to Greensburg, a town of just 740 
people east of Dodge City. Out-of-state visitors far outnumber Kansans.

Jack
 Benigno, from California’s San Joaquin Valley, already visited the well
 six years ago. But when he planned this road trip through southwest 
Kansas — which included another quirky stop at Liberal’s <a href="https://www.roadsideamerica.com/story/2815" target="_blank">Land of Oz</a> — he purposefully made time to descend into Greensburg’s hole in the ground once more.

“I love it,” Benigno said. “And I love Kansas.”

The well also has the distinction of being the oldest world’s largest thing in Kansas.

It
 dates back to the 1880s when Greensburg’s founders sought a way to 
attract more people to their new town. So they carved out the type of 
sensational water source that’d be something to write home about.

And as the name suggests, the massive well — 109 feet deep by 32 feet
 wide — was hand-dug. That meant teams of men shoveling out and carting 
up countless loads of dirt until they reached the Ogallala aquifer.

Visitors
 who come to the Big Well today follow in those footsteps, down a 
120-step staircase that spirals its way toward the water table.

Barnes,
 who directed the well museum for 10 years before becoming Greensburg’s 
city administrator, has walked up and down these steps countless times.

“It’s
 just mind-blowing,” Barnes said, gazing up from the final step near the
 bottom of the well, “how they would have done it with nothing but hand 
tools and oxen.”

The well didn’t last too long as a water source for Greensburg’s 
residents. But in 1939, it got a second chance at life as a tourist 
attraction.

By 1956, the well had welcomed 1 million visitors.

In
 2021, the museum’s admission fees and gift shop sales brought in more 
than $215,000 to this tiny community. And that doesn’t count the money 
tourists inevitably spent at nearby restaurants, hotels and gas stations
 before or after their stop at the well.

“It still keeps our community viable, just in a different way,” Barnes said. “Not for water, but for tourism.”

Kansas Tourism spokesperson Colby Sharples-Terry said these types of 
oddball attractions can translate into real economic benefits for small 
towns.

And she’s glad to see so many rural Kansas communities get 
serious about finding unique ways to stand out, even if those ways might
 seem unorthodox.

“They know that without change,” Sharples-Terry said, “the town’s gonna die.”

According to the state’s <a href="https://www.travelks.com/travel-industry/research-and-reports/economic-impact/" target="_blank">most recent data</a>,
 tourism’s per capita economic impact in Kiowa County — home to the Big 
Well — is $1,651 a year. That’s more than three times the $544 per 
capita tourism impact in Edwards County next door. And that far 
surpasses other nearby counties in rural southwest Kansas like Comanche 
($913) and Clark ($337).

It’s the same story for Cawker City. 
Tourism’s annual per capita economic impact in Mitchell County — home to
 the Ball of Twine — is $1,425. That’s way more than neighboring 
counties Jewell ($655), Lincoln ($520) and Ottawa ($422).

And even though the tourism dollars Cawker City and Greensburg 
generate may pale in comparison to bigger cities, Sharples-Terry said 
that revenue adds up here in ways that it wouldn’t elsewhere.

“If 
you go to Los Angeles, they won’t know that you’re there,” 
Sharples-Terry said. “But if you go to Lucas and visit these sites and 
eat lunch, that is directly impacting that community so much more.”

So what is it about these world’s largest attractions that has kept them relevant and profitable for so many years?

And why is Kansas — and the middle of the country, more broadly — such a hot spot for them?

That’s something Erika Nelson has pondered quite a bit during her time as a rural artist and world’s-largest-things aficionado.

“Kansans will try the craziest ideas in a very serious way,” Nelson said. “The naysayers get shut down pretty quickly.”

Nelson’s not only a fan of the world’s largest stuff. She also created one of the quirkiest giants in Kansas: the <a href="https://www.roadsideamerica.com/tip/46395" target="_blank">World’s Largest Souvenir Travel Plate</a> that greets travelers from the side of the highway as they drive into Lucas (population 394).

With an old phone company satellite dish as her canvas, Nelson 
painted it in the style of the gift shop tchotchkes tourists have taken 
home to their curio cabinets for decades.

True to form, she 
decorated it with a collage of illustrations that tell the story of 
Lucas — from the town’s over-the-top public restroom in the shape of a 
giant toilet (<a href="https://www.roadsideamerica.com/story/33788" target="_blank">Bowl Plaza</a>) to a mini Mount Rushmore replica a local artist built in her backyard to the <a href="http://www.gardenofedenlucas.org/" target="_blank">Garden of Eden</a>’s psychedelic-populist concrete sculptures, which put Lucas on the folk art map more than a century ago.

On Main Street, stands Nelson’s other Kansas landmark: a very meta shrine to oversized kitsch called the <a href="https://www.atlasobscura.com/places/worlds-largest-collection-of-smallest-versions-of-largest-things" target="_blank">World’s Largest Collection of the World’s Smallest Versions of the World’s Largest Things</a>.

Inside, a wall-sized U.S. map marks each world’s largest thing’s location with a red dot. Kansas has a lot of red.

“The
 Northeast doesn’t have that same sort of need to prove themselves in a 
big manner,” Nelson said. “But there’s this line from Texas up through 
Minnesota that is just littered with world’s largest things.”

Nelson
 said these colossal creations particularly resonate with people in 
Kansas and other parts of Middle America because they elevate the 
ordinary.

In a region perceived as reserved and understated, she said, putting up the <a href="https://www.roadsideamerica.com/tip/38003" target="_blank">World’s Largest Baseball</a> (Muscotah) or <a href="https://www.roadsideamerica.com/story/16559" target="_blank">Liberty Bell Made of Wheat</a>
 (Goessel) offers a subtle way to show pride in accomplishing something 
extraordinary and unexpected in an often-overlooked place.

“It’s 
almost like a humblebrag,” Nelson said. “It’s a lot of normal people 
living their lives who suddenly have this spark and say, ‘Hey, you know 
what would make this really great? Put an ‘-est’ on it."

Nelson’s fascination with “superlatives” — things bestowed with the 
title of world’s largest, smallest, tallest, etc. — began as a kid.

She
 learned to navigate her small hometown in central Missouri based on the
 town’s water tower, which had been painted by a local billiards factory
 into the world’s largest 8-ball. Then when she visited her grandparents
 in Minnesota, catching her first glimpse of the world’s largest Paul 
Bunyon statue let her know her destination grew near.

As a grad 
student studying art, Nelson began crafting her own diminutive versions 
of the world’s largest things as keepsakes from her travels — starting 
with the one that’s less than an hour from her home: Cawker City’s Ball 
of Twine.

That was more than two decades ago. She has now created close to 250 of these miniature replicas.

Once
 Nelson had enough fun-sized water towers and Paul Bunyans to start 
sharing her collection, she packed them up as a traveling roadshow. 
Sometimes she displayed them at official superlative events, like the 
giant ketchup bottle festival in Illinois, or at pop-up shows she held 
out of the bus that doubled as her living quarters.

Five years ago, her collection found this permanent home in an old storefront in downtown Lucas.

There’s
 the “edibles” collection that spans from the largest peanut in Georgia 
to the largest artichoke in California. Then all the water towers towns 
have transformed into the world’s largest watermelon (Texas) or ear of 
corn (Minnesota).

But the centerpiece of Nelson’s collection is a 
four-foot-by-eight-foot map of Kansas with her tiny models displayed 
inside clear protective bubbles, from the <a href="https://www.roadsideamerica.com/story/2104" target="_blank">World’s Largest Electric Coal Shovel</a> (Big Brutus in West Mineral) to the <a href="http://www.worldslargestthings.com/kansas/wren.htm" target="_blank">World’s Largest Wren</a> (Topeka) to the micro version of her own World’s Largest Souvenir Travel Plate.

When it comes to quirky roadside attractions in Kansas, the Ball of Twine and Big Well are just the tip of the oddball iceberg.

-Interstate 70 drivers in northwest Kansas can still catch a small glimpse of Oakley’s <a href="https://www.atlasobscura.com/places/prairie-dog-town" target="_blank">World’s Largest Prairie Dog</a>
 behind the privacy screen that was intended to prevent free looks. Both
 the giant rodent and the screen are still standing, even though <a href="https://www.tripadvisor.com/Attraction_Review-g38948-d195586-Reviews-Prairie_Dog_Town-Oakley_Kansas.html" target="_blank">Prairie Dog Town</a>
 — the unregulated zoo/curio tourist trap that built it — closed eight 
years ago. Known since 1968 for its bizarre billboards, Prairie Dog Town
 was also famous for its rattlesnake pit and six-legged cow.

-Garden City claims the <a href="https://www.roadsideamerica.com/tip/7446" target="_blank">World’s Largest Hairball</a>,
 a smooth sphere of cow hair the size of a beach ball that was 
discovered in the slaughtering line of a local meatpacking plant in 
1993. Visitor reviews say it feels like a velvety basketball. It also 
has the distinction of gracing the cover of Weekly World News along with
 Bat Boy and Bigfoot.

And then there’s the Kansas plethora of eccentric festivals. In far 
western Kansas, Russell Springs — population 28 — holds onto its title 
as the state’s <a href="https://www.roadsideamerica.com/tip/3036" target="_blank">Cow Chip Capital</a>
 by hosting a festival each September that includes a contest to see who
 can throw their poop patty the farthest. Other annual highlights 
include the <a href="http://elkfallsouthousetour.com/" target="_blank">Outhouse Festival</a> in Elk Falls, the <a href="https://hayspost.com/posts/c28f3c10-ff1d-41d0-9036-40036b11d817" target="_blank">Barbed Wire Festival</a> in La Crosse and the Cuba <a href="https://www.facebook.com/CubaRockAThon/" target="_blank">Rock-A-Thon</a>, which features three straight days of people rocking in rocking chairs 24/7.

And in Kansas, you don’t even have to be the biggest and best to be celebrated.

Seneca’s claim to fame is being home to the <a href="https://www.roadsideamerica.com/tip/502" target="_blank">second-largest</a><a href="https://www.roadsideamerica.com/tip/502" target="_blank"> hand-dug well</a>. Norton built an entire museum dedicated to presidential candidates who <a href="https://www.atlasobscura.com/places/they-also-ran-gallery-norton-kansas" target="_blank">finished second</a> (including native sons Bob Dole and Alf Landon). The Big Well museum proudly displays a 1,000-pound <a href="https://www.roadsideamerica.com/story/2878" target="_blank">pallasite meteorite</a>
 that used to be the world’s largest but now has a piece of paper with 
the words “one of the” taped to its sign conceding that it has been 
demoted by a bigger space rock.

And Kansas’ collection of astounding absurdities keeps growing as towns continue to view them as worthwhile investments.

The town of Wilson commissioned the <a href="https://www.atlasobscura.com/places/worlds-largest-czech-egg" target="_blank">World’s Largest Czech Egg</a> within the past decade. It then took nearly four years of work and <a href="https://www.kansas.com/article91027702.html" target="_blank">$16,000</a> to get the 20-foot, hand-painted fiberglass oval into place.

Abilene just announced this spring that it’s using <a href="http://www.abilene-rc.com/news/abilene-receives-attraction-development-grant/article_dbc34f04-d5f3-11ec-a670-a39aed50eccb.html" target="_blank">$22,000 from the state</a>
 to build the World’s Largest Belt Buckle, complete with a staircase 
that will position tourists for a photo of them “wearing” it.

As 
you can tell, these sites tend to reflect the idiosyncrasies of European
 settlers, not the Indigenous peoples they replaced. And the few 
American roadside attractions that do draw attention to non-white 
cultures, like wigwam village curio shops or giant <a href="https://www.roadsideamerica.com/story/55426" target="_blank">sombrero-clad men</a>
 carrying Mexican food, often fall on the side of cultural appropriation
 and exploitation rather than celebration and inclusion. Nelson’s next 
project will actually explore how outdated attractions nationwide 
represent race and what that means for them in today’s context.

But as roadside giants like the Ball of Twine outlast their 
nay-sayers, Nelson said Kansans’ chutzpah to make something of 
themselves in the face of long odds and skepticism mirrors the 
lemonade-from-lemons attitude that has long been key to survival on the 
Plains.

Quirky curiosities mean money and pride for small Kansas towns

HOUSTON (AP) — For a brief moment in 2012, it seemed like a national stalemate over guns was breaking.

Adam Lanza, a 20-year-old gunman, had forced his way into a Connecticut elementary school and massacred 26 people, mostly children, with an AR-15-style rifle. Flags flew at half-staff. A sporting goods chain suspended sales of similar weapons. And longtime gun-rights supporters from both parties in Congress said they were willing to consider new legislation. The issue was complex, then-President Barack Obama said, but everyone was obligated to try.

Then, one week after the bloodshed at Sandy Hook elementary, the most powerful gun lobby in the U.S. made its public position known and the effort unraveled.

“The only thing that stops a bad guy with a gun is a good guy with a gun,” National Rifle Association CEO Wayne LaPierre said in a defiant speech that blamed video games, cowardly lawmakers, the media and a perverted society for the carnage, while calling for armed guards at schools across the U.S.

Nearly a decade later, the nation is at another crossroads. A gunman killed at least 19 children with a similar weapon at an elementary school in Uvalde, Texas, on Tuesday in the nation’s second mass killing this month. This time, however, LaPierre didn’t need to address the bloodshed — the organization’s Republican allies in Congress did.

“The problem starts with people. Not with guns.” Alabama Sen. Tommy Tuberville, who holds an A-rating and an endorsement from the NRA, told reporters Wednesday, bluntly summing up the position of many in the GOP, especially considering the party’s recent turn further right. “I’m very sorry it happened. But guns are not the problem, OK. People are the problem. That’s where it starts. And we’ve had guns forever, and we’re gonna continue to have guns.”

Much has changed since Sandy Hook. The NRA is on the ropes after a series of costly financial scandals and lawsuits. And an ascendant gun control movement has poured tens of millions of dollars into political campaigns to counter their message. The group Moms Demand Action, for example, was founded the day after the Sandy Hook shooting.

“How many more children have to die?” founder Shannon Watts said this week. “How many parents, teachers, shoppers and worshippers, and lives must be taken for our leaders to do something? Any senator who sides with the gun lobby, who blocks life-saving change, is choosing carnage and gun industry profits over the precious lives of our children.”

But even as mass shootings continue unabated, in Washington one thing remains the same: Republicans and Democrats both agree there is little chance that legislation tightening gun laws will be passed by a narrowly divided Congress. The gridlock, which remains even as public opinion supports some tighter gun laws, offers testament to the enduring influence of gun rights groups, which have spent $171 million lobbying the federal government since 1989.

“I want to be more optimistic. But I don’t think it will change,” said Sen. Chris Coons, D-Del.

The NRA isn’t the same powerhouse it once was, and in its wake other, further right gun groups have gained, like the Gun Owners of America, which bills itself as the “no compromise” gun lobby. There are multiple gun rights alliances operating at state levels wielding enormous influence in legislatures as well. But in 40 years of working to loosen gun laws, the NRA has largely set the cultural tone on the right and is still the most prominent.

“You don’t need the NRA, really, to take the lead anymore because opposition to gun laws is so much now a litmus test of conservatism and the Republican Party that it has its own momentum,” said Robert Spitzer, a political science professor at the State University of New York at Cortland and the author of five books on gun policy.

“As we’ve seen it stumble in recent years, it’s not that gun culture has overall become weakened,” adds David Yamane, a sociology professor at Wake Forest University who studies American gun culture. “There’s other membership organizations that have arisen or grown to fill some of the gap that the NRA used to serve.”

The NRA has a built a well of goodwill by disbursing more than $70 million to further the political ambitions of Republicans who currently serve in Congress, often by running ads attacking Democrats, according to an analysis of data from the nonpartisan Center for Responsive Politics, which tracks political spending. They’ve spent a comparatively small $171,000 helping pro-gun Democrats who are currently in the House or Senate, the analysis shows.

The NRA’s gold-standard endorsements are also sought after by Republican candidates, particularly in primary elections, where they serve as a cultural shorthand for what it means to be a conservative. Receiving a poor letter grade from the organization can be a major source of concern.

Still, as the NRA&nbsp;<a href="https://apnews.com/article/uvalde-school-shooting-nra-convention-212dfd1b57474f1ab208d4a72521a010">gathered this past week in Houston</a>&nbsp;for its first convention since 2019, current and former board members say the secretive organization must confront a growing crisis.

The New York Attorney General’s office filed a lawsuit seeking to dissolve the organization. Court proceedings have revealed how LaPierre and others&nbsp;<a href="https://apnews.com/article/business-new-york-lawsuits-manhattan-national-rifle-association-ab050b840a1930b7b316ac71741077e7">diverted tens of millions of dollars</a>&nbsp;for lavish personal trips and no-show contracts for associates, among other questionable expenditures.

That led the organization to file for bankruptcy in 2021. But a judge dismissed the case, which was brought by LaPierre without the consent of the NRA board, ruling it was not filed in good faith.

The financial difficulties have led to mass layoffs, a reduction in programs and a sharp drop in political spending, which had reached an apex in 2016 when the organization spent $54 million, most of it helping Donald Trump win the White House.

NRA contributions have dropped sharply in the past two years, according to campaign finance data compiled by the nonpartisan Center for Responsive Politics, which tracks money in politics.

“The NRA is becoming really a shell of its former self,” said former NRA board member Rocky Marshall. “It cannot carry out the mission of the NRA because all the money is being spent on attorneys.”

Marshall is backing a push to replace LaPierre with Allen West, the former chairman of the Texas GOP party. Marshall is also hoping to pull back from the culture wars and find common ground with gun-safety advocates. “Instead of being antagonistic or defensive, we need to have a dialogue because we can do a lot more to prevent gun violence like this.”

One area where the NRA remains formidable is its lobbying of the federal government. In 2021, the organization nearly tied its past records set in 2017 and 2018, spending over $4.8 million, records show. Firearms themselves are part of the culture as well. Gun purchases grew enormously during the pandemic, and a&nbsp;<a href="https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3887145" target="_blank">2021 National Firearms Survey</a>&nbsp;found that 81 million Americans are gun owners. While the NRA only claims a fraction of that, about 5 million, as members, they tend to be vocal.

NRA spokesman Andrew Arulanandam said that declarations of the group’s demise are “wishful thinking on the part of our detractors.”

“The reality is significantly different and the results speak for themselves,” he said.

Still, an NRA brand that some view as toxic has presented an opportunity for other gun-rights groups, including some that strike a more measured tone.

The National Shooting Sports Foundation, which represents gun sellers, spent over $4.8 million on lobbying last year, reaching parity with the NRA. It’s avoided heated partisan rhetoric and has a growing influence as the NRA star has waned.

“We are not going to approach those who disagree with our viewpoints or our industry in a denigrating manner,” said Mark Oliva, the managing director of public affairs for NSSF.

The gun rights movement also continues to have success at the state level, where it has focused on repealing laws requiring a permit to carry a concealed handgun. Roughly half the states in the U.S. have rolled back such laws, with Texas, Indiana and Tennessee all doing so in the past year.

The Supreme Court, meanwhile, is expected to soon issue its&nbsp;<a href="https://apnews.com/article/us-supreme-court-new-york-los-angeles-gun-politics-d7481cb9fd55626abec33e50f1b1a639">biggest gun ruling in more than a decade</a>, one expected to make it easier to carry guns in public in some of the nation’s largest cities.

For gun owners who traveled from around the country for the convention, the NRA remains a lodestar. Barbara Galis, 75, of Racine, Wisconsin, said she is concerned about the allegations of mismanagement but isn’t sure another organization “has the influence to support gun rights.”

“What other avenue do we have? Where do we go?” she said.

<figure>
 <img src="https://media.eaglewebservices.com/public/2022/5/1653748966648.png" alt="Former President Donald Trump spoke to the NRA convention in Houston on Friday." />
 <figcaption>Former President Donald Trump spoke to the NRA convention in Houston on Friday.</figcaption>
 </figure>HOUSTON (AP) — For a brief moment in 2012, it seemed like a national stalemate over guns was breaking.<div><iframe src="https://www.facebook.com/plugins/video.php?height=314&href=https%3A%2F%2Fwww.facebook.com%2FNRA%2Fvideos%2F1374118239733506%2F&show_text=false&width=560&t=9304" width="560" height="314" style="border:none;overflow:hidden" scrolling="no" frameborder="0" allowfullscreen="true" allow="autoplay; clipboard-write; encrypted-media; picture-in-picture; web-share" allowFullScreen="true"></iframe></div>Adam Lanza, a 20-year-old gunman, had forced his way into a Connecticut elementary school and massacred 26 people, mostly children, with an AR-15-style rifle. Flags flew at half-staff. A sporting goods chain suspended sales of similar weapons. And longtime gun-rights supporters from both parties in Congress said they were willing to consider new legislation. The issue was complex, then-President Barack Obama said, but everyone was obligated to try.Then, one week after the bloodshed at Sandy Hook elementary, the most powerful gun lobby in the U.S. made its public position known and the effort unraveled.“The only thing that stops a bad guy with a gun is a good guy with a gun,” National Rifle Association CEO Wayne LaPierre said in a defiant speech that blamed video games, cowardly lawmakers, the media and a perverted society for the carnage, while calling for armed guards at schools across the U.S.Nearly a decade later, the nation is at another crossroads. A gunman killed at least 19 children with a similar weapon at an elementary school in Uvalde, Texas, on Tuesday in the nation’s second mass killing this month. This time, however, LaPierre didn’t need to address the bloodshed — the organization’s Republican allies in Congress did.“The problem starts with people. Not with guns.” Alabama Sen. Tommy Tuberville, who holds an A-rating and an endorsement from the NRA, told reporters Wednesday, bluntly summing up the position of many in the GOP, especially considering the party’s recent turn further right. “I’m very sorry it happened. But guns are not the problem, OK. People are the problem. That’s where it starts. And we’ve had guns forever, and we’re gonna continue to have guns.”Much has changed since Sandy Hook. The NRA is on the ropes after a series of costly financial scandals and lawsuits. And an ascendant gun control movement has poured tens of millions of dollars into political campaigns to counter their message. The group Moms Demand Action, for example, was founded the day after the Sandy Hook shooting.“How many more children have to die?” founder Shannon Watts said this week. “How many parents, teachers, shoppers and worshippers, and lives must be taken for our leaders to do something? Any senator who sides with the gun lobby, who blocks life-saving change, is choosing carnage and gun industry profits over the precious lives of our children.”But even as mass shootings continue unabated, in Washington one thing remains the same: Republicans and Democrats both agree there is little chance that legislation tightening gun laws will be passed by a narrowly divided Congress. The gridlock, which remains even as public opinion supports some tighter gun laws, offers testament to the enduring influence of gun rights groups, which have spent $171 million lobbying the federal government since 1989.“I want to be more optimistic. But I don’t think it will change,” said Sen. Chris Coons, D-Del.The NRA isn’t the same powerhouse it once was, and in its wake other, further right gun groups have gained, like the Gun Owners of America, which bills itself as the “no compromise” gun lobby. There are multiple gun rights alliances operating at state levels wielding enormous influence in legislatures as well. But in 40 years of working to loosen gun laws, the NRA has largely set the cultural tone on the right and is still the most prominent.“You don’t need the NRA, really, to take the lead anymore because opposition to gun laws is so much now a litmus test of conservatism and the Republican Party that it has its own momentum,” said Robert Spitzer, a political science professor at the State University of New York at Cortland and the author of five books on gun policy.“As we’ve seen it stumble in recent years, it’s not that gun culture has overall become weakened,” adds David Yamane, a sociology professor at Wake Forest University who studies American gun culture. “There’s other membership organizations that have arisen or grown to fill some of the gap that the NRA used to serve.”The NRA has a built a well of goodwill by disbursing more than $70 million to further the political ambitions of Republicans who currently serve in Congress, often by running ads attacking Democrats, according to an analysis of data from the nonpartisan Center for Responsive Politics, which tracks political spending. They’ve spent a comparatively small $171,000 helping pro-gun Democrats who are currently in the House or Senate, the analysis shows.The NRA’s gold-standard endorsements are also sought after by Republican candidates, particularly in primary elections, where they serve as a cultural shorthand for what it means to be a conservative. Receiving a poor letter grade from the organization can be a major source of concern.Still, as the NRA&nbsp;<a href="https://apnews.com/article/uvalde-school-shooting-nra-convention-212dfd1b57474f1ab208d4a72521a010">gathered this past week in Houston</a>&nbsp;for its first convention since 2019, current and former board members say the secretive organization must confront a growing crisis.The New York Attorney General’s office filed a lawsuit seeking to dissolve the organization. Court proceedings have revealed how LaPierre and others&nbsp;<a href="https://apnews.com/article/business-new-york-lawsuits-manhattan-national-rifle-association-ab050b840a1930b7b316ac71741077e7">diverted tens of millions of dollars</a>&nbsp;for lavish personal trips and no-show contracts for associates, among other questionable expenditures.That led the organization to file for bankruptcy in 2021. But a judge dismissed the case, which was brought by LaPierre without the consent of the NRA board, ruling it was not filed in good faith.The financial difficulties have led to mass layoffs, a reduction in programs and a sharp drop in political spending, which had reached an apex in 2016 when the organization spent $54 million, most of it helping Donald Trump win the White House.NRA contributions have dropped sharply in the past two years, according to campaign finance data compiled by the nonpartisan Center for Responsive Politics, which tracks money in politics.“The NRA is becoming really a shell of its former self,” said former NRA board member Rocky Marshall. “It cannot carry out the mission of the NRA because all the money is being spent on attorneys.”Marshall is backing a push to replace LaPierre with Allen West, the former chairman of the Texas GOP party. Marshall is also hoping to pull back from the culture wars and find common ground with gun-safety advocates. “Instead of being antagonistic or defensive, we need to have a dialogue because we can do a lot more to prevent gun violence like this.”One area where the NRA remains formidable is its lobbying of the federal government. In 2021, the organization nearly tied its past records set in 2017 and 2018, spending over $4.8 million, records show. Firearms themselves are part of the culture as well. Gun purchases grew enormously during the pandemic, and a&nbsp;<a href="https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3887145" target="_blank">2021 National Firearms Survey</a>&nbsp;found that 81 million Americans are gun owners. While the NRA only claims a fraction of that, about 5 million, as members, they tend to be vocal.NRA spokesman Andrew Arulanandam said that declarations of the group’s demise are “wishful thinking on the part of our detractors.”“The reality is significantly different and the results speak for themselves,” he said.Still, an NRA brand that some view as toxic has presented an opportunity for other gun-rights groups, including some that strike a more measured tone.The National Shooting Sports Foundation, which represents gun sellers, spent over $4.8 million on lobbying last year, reaching parity with the NRA. It’s avoided heated partisan rhetoric and has a growing influence as the NRA star has waned.“We are not going to approach those who disagree with our viewpoints or our industry in a denigrating manner,” said Mark Oliva, the managing director of public affairs for NSSF.The gun rights movement also continues to have success at the state level, where it has focused on repealing laws requiring a permit to carry a concealed handgun. Roughly half the states in the U.S. have rolled back such laws, with Texas, Indiana and Tennessee all doing so in the past year.The Supreme Court, meanwhile, is expected to soon issue its&nbsp;<a href="https://apnews.com/article/us-supreme-court-new-york-los-angeles-gun-politics-d7481cb9fd55626abec33e50f1b1a639">biggest gun ruling in more than a decade</a>, one expected to make it easier to carry guns in public in some of the nation’s largest cities.For gun owners who traveled from around the country for the convention, the NRA remains a lodestar. Barbara Galis, 75, of Racine, Wisconsin, said she is concerned about the allegations of mismanagement but isn’t sure another organization “has the influence to support gun rights.”“What other avenue do we have? Where do we go?” she said.___

As US mourns shootings, NRA in turmoil but influence remains

By ALEX SMITH <a href="https://www.kcur.org/health/2022-05-24/a-kansas-man-with-a-rare-disorder-spent-decades-advocating-for-gene-therapy-it-may-never-help-him">Kansas News Service</a>

In the summer of 1999, a soft-spoken air traffic control specialist 
from South Dakota named Donavon Decker captured national attention when 
he signed on for a patient trial testing the safety of a potential 
breakthrough treatment for a form of muscular dystrophy.

On the Muscular Dystrophy Association telethon — hosted by comedian Jerry Lewis — in USA Today and in <a href="https://www.chicagotribune.com/news/ct-xpm-1999-09-03-9909040218-story.html" target="_blank">news outlets</a> across the country, Decker told his story.

He was born with a degenerative disorder called limb girdle muscular dystrophy type 2D, which affects just <a href="https://www.futuremedicine.com/doi/10.2217/nmt-2020-0066" target="_blank">three or four people in 1 million</a>. It gradually weakens patients’ muscles and caused Decker to walk with a gait.

Researchers
 at Nationwide Children’s Hospital in Ohio, led by Dr. Jerry Mendell, 
aimed to treat LGMD2D by injecting patients with a virus that contained a
 working copy of the gene that caused their condition.

Decker had four sisters who also had the disorder, and he eagerly volunteered for the trial.

“I
 knew it wasn’t going to be a cure, but I thought eventually, they would
 come up with this to where it would be a cure,” Decker told KCUR 
recently. “Having my family affected the way it was, was important to me
 to try to help myself and my family.”

The risks of this early gene therapy research became apparent just a few weeks later, when a patient named <a href="https://www.sciencehistory.org/distillations/the-death-of-jesse-gelsinger-20-years-later" target="_blank">Jesse Gelsinger</a> died in an unrelated trial.

Decker,
 however, was undeterred. He became a passionate advocate for gene 
therapy research, speaking at conferences, urging other patients to 
volunteer for trials, and lobbying Congress for funding.

This kind
 of intense patient advocacy is common, and necessary, in the rare 
disease world. Big drug companies usually don’t have much financial 
interest in early-stage research for conditions that affect so few 
patients.

So it’s often up to those very patients, their families and nonprofit groups to fund researchers.

Sharon Hesterlee is the chief research officer for the Muscular 
Dystrophy Association. The organization has spent $125 million to 
develop gene therapy, often with the goal of attracting a company that 
could fund more expensive further steps.

For example, the Muscular Dystrophy Association spent $4 million for the safety trial that Decker participated in.

“A
 lot of what we do is de-risking,” Hesterlee said. “So we want to pave 
the way and make it easier for the next party — it’s usually a drug 
development company — to pick things up and move it forward.”

While
 drug companies foot the bill for larger trials or virus manufacturing, 
they may also bring their own considerations as for-profits.

“Companies
 have a lot of thing they have to pay attention to,” Hesterlee says. 
“From shareholders to timelines they have to prioritize sometimes. Some 
things will fall off the radar because they’ve got to prioritize a 
different drug. So all of that can be very frustrating.”

Now, the 
Muscular Dystrophy Association sometimes requires companies that 
purchase intellectual property it helped develop to show their progress 
on the research, or else that ownership will revert back to the 
nonprofit group.

Much of the media coverage of Decker’s 1999 trial
 suggested a treatment might be developed just around the corner, but 
that didn’t happen. In fact, Gelsinger’s death caused gene therapy 
research as a whole to grind to a halt, and when trials resumed, the 
pace of research struggled to regain momentum. 

Decker’s sister, June, participated in another LGMD2D trial conducted by Children’s Nationwide a few years later. 

However, it took nearly two decades after Decker's trial before a company finally took a serious interest.

In
 2017, an Ohio-based company named Myonexus Therapeutics was formed to 
advance the gene therapy research developed at Children’s Nationwide. 
Then in 2019, Massachusetts-based Sarepta Therapeutics <a href="https://investorrelations.sarepta.com/news-releases/news-release-details/sarepta-exercises-option-acquire-myonexus-therapeutics" target="_blank">purchased Myonexus</a> for $165 million.

To Donavon’s disappointment, Sarepta didn’t launch more advanced clinical trials for LGMD2D treatment.

Instead, the company announced it would began a <a href="https://clinicaltrials.gov/ct2/show/NCT04475926" target="_blank">natural history study</a>, in which scientists may spend years simply monitoring how a condition like limb girdle muscular dystrophy affects patients.

Sarepta chief medical officer Louise Rodino-Klapac explains this is a
 prerequisite to taking additional steps for rare disease research.

“When
 you can’t do a large clinical trial with hundreds of patients, you 
really need to understand the natural history, meaning how patients 
progress over time so that you can design a clinical trial that can show
 improvement, for example, and then lead to approval of the therapy,” 
Rodino-Klapac said.

Rodino-Klapac previously worked on limb girdle
 muscular dystrophy treatment development with Mendell at Nationwide 
Children’s Hospital. She said she sympathizes with waiting patients like
 Decker.

“We completely understand the communities’ desire to move
 investigational treatments faster, and that’s our desire too,” 
Rodino-Klapac said. “It’s just important to understand that there are 
steps in the drug development process that just take time.”

To 
Decker, though, Sarepta's natural history study seemed to be a step 
backwards. Especially since other gene therapy treatments have already 
hit the market — like Zolgensma, which dramatically improves spinal 
muscular atrophy.

Earlier this year, Sarepta announced its own encouraging results in trials to treat <a href="https://investorrelations.sarepta.com/news-releases/news-release-details/sarepta-therapeutics-gene-therapy-srp-9001-shows-statistically" target="_blank">Duchenne muscular dystrophy</a>.

But
 gene therapy development for other muscular disorders has proven more 
complicated than many researchers initial expected, Hesterlee says, due 
to the challenge of affecting large areas of muscles and because of 
toxicity issues related to the treatment.

According to Dr. John 
Porter, gene therapy research across the board has been plagued by slow 
progress and setbacks, in part because many researchers had incomplete 
knowledge of the rare diseases they attempted to treat and the steps 
involved in getting treatments approved.

Porter is a former 
muscular dystrophy researcher, patient advocate and program director of 
the National Institutes of Health / National Institute of Neurological 
Disorders and Stroke.

He says researchers underestimated the 
importance of natural history trials, like the one Sarepta is 
conducting, which can provide essential information to help demonstrate 
whether a treatment is effective.

“Even in the company level, 
researchers didn’t fully understand just how important it was to 
understand how the disease progresses in informing what you measure in a
 clinical trial,” Porter said.

But he says researchers and 
companies also created unrealistic expectations about their work as they
 sought to attract research funds or investor dollars. News outlets’ 
often-breathless coverage of the research added to that problem as well.

By
 suggesting that breakthrough cures could be imminent, these groups have
 sometimes misled patients and the general public about the realities of
 medical research.

“It’s actually very damaging for a researcher 
to hype both the timeframe and the level of effect that any particular 
drug might achieve,” Porter says.

Today, Donavon Decker is 59 and he lives in a sunny ranch-style house
 near Wichita, Kansas, with his wife, Kirsten. His health has been 
declining more rapidly due to his condition. He now uses a motorized 
wheelchair and his lung capacity is diminishing, although he still 
enjoys time with his friends and family.

Donavon is no longer able to work, but he closely follows news about gene therapy from a computer in his living room.

After
 nearly 25 years of advocating for gene therapy research, Decker is 
disappointed that much of its potential has yet to be realized.

“I
 think of all the families that have been helped with gene therapy,” 
Decker says. “It’s good to know that I had a part to play in the ones 
for the muscular dystrophy and spinal muscular atrophy. But there’s 
still a big hole there for me because my family hasn’t been helped.”

Still,
 Decker encourages other patients to take part in research. He remains 
hopeful that someday, gene therapy will lead to a cure.

<figure>
 <img src="https://media.eaglewebservices.com/public/2022/5/1653496766474.png" alt="Donavan Decker talks while sitting in the middle of a room at his home in Andover, Kans., where he keeps a small office space. Carlos Moreno / KCUR 89.3" />
 <figcaption>Donavan Decker talks while sitting in the middle of a room at his home in Andover, Kans., where he keeps a small office space. Carlos Moreno / KCUR 89.3</figcaption>
 </figure>By ALEX SMITH <a href="https://www.kcur.org/health/2022-05-24/a-kansas-man-with-a-rare-disorder-spent-decades-advocating-for-gene-therapy-it-may-never-help-him">Kansas News Service</a>In the summer of 1999, a soft-spoken air traffic control specialist 
from South Dakota named Donavon Decker captured national attention when 
he signed on for a patient trial testing the safety of a potential 
breakthrough treatment for a form of muscular dystrophy.On the Muscular Dystrophy Association telethon — hosted by comedian Jerry Lewis — in USA Today and in <a href="https://www.chicagotribune.com/news/ct-xpm-1999-09-03-9909040218-story.html" target="_blank">news outlets</a> across the country, Decker told his story. He was born with a degenerative disorder called limb girdle muscular dystrophy type 2D, which affects just <a href="https://www.futuremedicine.com/doi/10.2217/nmt-2020-0066" target="_blank">three or four people in 1 million</a>. It gradually weakens patients’ muscles and caused Decker to walk with a gait.Researchers
 at Nationwide Children’s Hospital in Ohio, led by Dr. Jerry Mendell, 
aimed to treat LGMD2D by injecting patients with a virus that contained a
 working copy of the gene that caused their condition.Decker had four sisters who also had the disorder, and he eagerly volunteered for the trial.“I
 knew it wasn’t going to be a cure, but I thought eventually, they would
 come up with this to where it would be a cure,” Decker told KCUR 
recently. “Having my family affected the way it was, was important to me
 to try to help myself and my family.”The risks of this early gene therapy research became apparent just a few weeks later, when a patient named <a href="https://www.sciencehistory.org/distillations/the-death-of-jesse-gelsinger-20-years-later" target="_blank">Jesse Gelsinger</a> died in an unrelated trial.Decker,
 however, was undeterred. He became a passionate advocate for gene 
therapy research, speaking at conferences, urging other patients to 
volunteer for trials, and lobbying Congress for funding.This kind
 of intense patient advocacy is common, and necessary, in the rare 
disease world. Big drug companies usually don’t have much financial 
interest in early-stage research for conditions that affect so few 
patients.So it’s often up to those very patients, their families and nonprofit groups to fund researchers.<figure>
 <img src="https://media.eaglewebservices.com/public/2022/5/1653496827374.png" alt="Donavon Decker is now retired and lives in Wichita with his wife, Kirsten. Carlos Moreno / KCUR 89.3" />
 <figcaption>Donavon Decker is now retired and lives in Wichita with his wife, Kirsten. Carlos Moreno / KCUR 89.3</figcaption>
 </figure>Sharon Hesterlee is the chief research officer for the Muscular 
Dystrophy Association. The organization has spent $125 million to 
develop gene therapy, often with the goal of attracting a company that 
could fund more expensive further steps.For example, the Muscular Dystrophy Association spent $4 million for the safety trial that Decker participated in.“A
 lot of what we do is de-risking,” Hesterlee said. “So we want to pave 
the way and make it easier for the next party — it’s usually a drug 
development company — to pick things up and move it forward.”While
 drug companies foot the bill for larger trials or virus manufacturing, 
they may also bring their own considerations as for-profits.“Companies
 have a lot of thing they have to pay attention to,” Hesterlee says. 
“From shareholders to timelines they have to prioritize sometimes. Some 
things will fall off the radar because they’ve got to prioritize a 
different drug. So all of that can be very frustrating.”Now, the 
Muscular Dystrophy Association sometimes requires companies that 
purchase intellectual property it helped develop to show their progress 
on the research, or else that ownership will revert back to the 
nonprofit group.Much of the media coverage of Decker’s 1999 trial
 suggested a treatment might be developed just around the corner, but 
that didn’t happen. In fact, Gelsinger’s death caused gene therapy 
research as a whole to grind to a halt, and when trials resumed, the 
pace of research struggled to regain momentum. Decker’s sister, June, participated in another LGMD2D trial conducted by Children’s Nationwide a few years later. However, it took nearly two decades after Decker's trial before a company finally took a serious interest.In
 2017, an Ohio-based company named Myonexus Therapeutics was formed to 
advance the gene therapy research developed at Children’s Nationwide. 
Then in 2019, Massachusetts-based Sarepta Therapeutics <a href="https://investorrelations.sarepta.com/news-releases/news-release-details/sarepta-exercises-option-acquire-myonexus-therapeutics" target="_blank">purchased Myonexus</a> for $165 million.To Donavon’s disappointment, Sarepta didn’t launch more advanced clinical trials for LGMD2D treatment.Instead, the company announced it would began a <a href="https://clinicaltrials.gov/ct2/show/NCT04475926" target="_blank">natural history study</a>, in which scientists may spend years simply monitoring how a condition like limb girdle muscular dystrophy affects patients. <figure>
 <img src="https://media.eaglewebservices.com/public/2022/5/1653496870564.png" alt="Donovan Decker maintains an office space in his Andover home where he can manipulate his wheelchair to fit below the desk. Carlos Moreno / KCUR 89.3" />
 <figcaption>Donovan Decker maintains an office space in his Andover home where he can manipulate his wheelchair to fit below the desk. Carlos Moreno / KCUR 89.3</figcaption>
 </figure>Sarepta chief medical officer Louise Rodino-Klapac explains this is a
 prerequisite to taking additional steps for rare disease research.“When
 you can’t do a large clinical trial with hundreds of patients, you 
really need to understand the natural history, meaning how patients 
progress over time so that you can design a clinical trial that can show
 improvement, for example, and then lead to approval of the therapy,” 
Rodino-Klapac said.Rodino-Klapac previously worked on limb girdle
 muscular dystrophy treatment development with Mendell at Nationwide 
Children’s Hospital. She said she sympathizes with waiting patients like
 Decker.“We completely understand the communities’ desire to move
 investigational treatments faster, and that’s our desire too,” 
Rodino-Klapac said. “It’s just important to understand that there are 
steps in the drug development process that just take time.”To 
Decker, though, Sarepta's natural history study seemed to be a step 
backwards. Especially since other gene therapy treatments have already 
hit the market — like Zolgensma, which dramatically improves spinal 
muscular atrophy.Earlier this year, Sarepta announced its own encouraging results in trials to treat <a href="https://investorrelations.sarepta.com/news-releases/news-release-details/sarepta-therapeutics-gene-therapy-srp-9001-shows-statistically" target="_blank">Duchenne muscular dystrophy</a>. But
 gene therapy development for other muscular disorders has proven more 
complicated than many researchers initial expected, Hesterlee says, due 
to the challenge of affecting large areas of muscles and because of 
toxicity issues related to the treatment.According to Dr. John 
Porter, gene therapy research across the board has been plagued by slow 
progress and setbacks, in part because many researchers had incomplete 
knowledge of the rare diseases they attempted to treat and the steps 
involved in getting treatments approved.Porter is a former 
muscular dystrophy researcher, patient advocate and program director of 
the National Institutes of Health / National Institute of Neurological 
Disorders and Stroke.He says researchers underestimated the 
importance of natural history trials, like the one Sarepta is 
conducting, which can provide essential information to help demonstrate 
whether a treatment is effective.“Even in the company level, 
researchers didn’t fully understand just how important it was to 
understand how the disease progresses in informing what you measure in a
 clinical trial,” Porter said.But he says researchers and 
companies also created unrealistic expectations about their work as they
 sought to attract research funds or investor dollars. News outlets’ 
often-breathless coverage of the research added to that problem as well.By
 suggesting that breakthrough cures could be imminent, these groups have
 sometimes misled patients and the general public about the realities of
 medical research.“It’s actually very damaging for a researcher 
to hype both the timeframe and the level of effect that any particular 
drug might achieve,” Porter says.<figure>
 <img src="https://media.eaglewebservices.com/public/2022/5/1653496909393.png" alt="Donovan Decker uses a joystick and several buttons to manipulate his motorized wheelchair. Carlos Moreno / KCUR 89.3" />
 <figcaption>Donovan Decker uses a joystick and several buttons to manipulate his motorized wheelchair. Carlos Moreno / KCUR 89.3</figcaption>
 </figure>Today, Donavon Decker is 59 and he lives in a sunny ranch-style house
 near Wichita, Kansas, with his wife, Kirsten. His health has been 
declining more rapidly due to his condition. He now uses a motorized 
wheelchair and his lung capacity is diminishing, although he still 
enjoys time with his friends and family.Donavon is no longer able to work, but he closely follows news about gene therapy from a computer in his living room.After
 nearly 25 years of advocating for gene therapy research, Decker is 
disappointed that much of its potential has yet to be realized.“I
 think of all the families that have been helped with gene therapy,” 
Decker says. “It’s good to know that I had a part to play in the ones 
for the muscular dystrophy and spinal muscular atrophy. But there’s 
still a big hole there for me because my family hasn’t been helped.”Still,
 Decker encourages other patients to take part in research. He remains 
hopeful that someday, gene therapy will lead to a cure.

Kan. man spent decades advocating for gene therapy. It may never help him

By STEVE VOCKRODT <a href="https://kansasreflector.com/2022/05/28/midwest-church-figures-on-southern-baptist-convention-list-of-accused-sex-abusers/">Midwest Newsroom</a>

The Southern Baptist Convention on 
Thursday released a once-secret and lengthy list of accused sex abusers —
 several of whom are in the Midwest — within the denomination.

The 205-page list is a compilation of
 ministers and other church workers who have been credibly accused of 
sexual abuse. The list is described as a “fluid, working document” that 
was also incomplete but largely pulls information about abusers from 
published news reports.

The publication of the list comes 
after the release of a 300-page report by an independent investigator 
that described how leaders of the Southern Baptist denomination for 
decades have received reports of sexual abuse committed by church 
workers, pastors and others. But those reports were largely kept secret 
and, rather than acting upon and investigating reports of sexual abuse, 
denomination leaders sought to intimidate and vilify victims and their 
advocates.

“The whole thing should be seen for 
what it is,” wrote former Southern Baptist Convention executive 
committee member and general counsel D. August Boto in an internal email
 that was published in the report. “It’s a satanic scheme to completely 
distract us from evangelism.”

The crisis rocking the Southern 
Baptist denomination this week is similar in many ways to what the 
Catholic church continues to face. Leaders in both faiths systematically
 hid information about sexual misconduct, appeared to show more concern 
about their own legal liability than the victims and at times failed to 
expel accused abusers from positions of authority.

In 2007, Father Thomas Doyle, a 
Catholic priest credited as one of the first to warn of his own 
denomination’s clergy sex abuse crisis, wrote a letter to SBC leadership
 conveying his concern that Southern Baptist leaders were repeating the 
failures of the Catholic church in dealing with sex abuse.

Doyle was told, “Southern Baptist 
leaders truly have no authority over local churches,” a response that 
Doyle regarded as dismissive, according to the investigative report.

That same year, at the SBC convention
 in San Antonio, Oklahoma pastor Wade Burleson made a motion to create a
 database of Southern Baptist clergy who had been convicted or credibly 
accused of, or had confessed to sexual abuse. The proposal was meant to 
“assist in preventing any future sexual abuse or harassment.”

The database proposal appeared to go 
nowhere, according to the report, and witnesses at the convention 
recalled little about it except to express their opinion that it would 
“violate local church autonomy.”

Ultimately, a staffer for the SBC 
executive committee since 2007 had maintained a list of accused 
ministers and church workers, but it was kept hidden from the public and
 even SBC executive committee trustees, according to the report.

Southern Baptist leaders said 
publicizing the list of credibly accused abusers represented “an 
initial, but important, step towards addressing the scourge of sexual 
abuse and implementing reform in the Convention.”

“Each entry in this list reminds us 
of the devastation and destruction brought about by sexual abuse,” said a
 joint statement from Willie McLaurin and Rolland Slade, both SBC 
executive committee members. “Our prayer is that the survivors of these 
heinous acts find hope and healing, and that churches will utilize this 
list proactively to protect and care for the most vulnerable among us.”

Lawyers for the SBC executive 
committee researched the list of accused abusers, taking steps to verify
 information it contained. It left unredacted entries about alleged 
abusers that could be confirmed, while redacting entries where someone 
was acquitted or did not have a final disposition, as well as 
information that could identify victims.

Missouri men feature prominently on the list. They include:

This story comes from the Midwest Newsroom, an investigative journalism collaboration including <a target="_blank" href="https://www.iowapublicradio.org/">IPR</a>, <a target="_blank" href="https://www.kcur.org/">KCUR 89.3</a>, <a target="_blank" href="https://nebraskapublicmedia.org/">Nebraska Public Media News</a>, <a target="_blank" href="https://news.stlpublicradio.org/">St. Louis Public Radio </a>and <a target="_blank" href="https://www.npr.org/">NPR</a>.

<figure>
 <img src="https://media.eaglewebservices.com/public/2022/5/1653842447407.png" alt="Parkade Baptist Church in Columbia, Missouri, is where Dale G. Johnson was a youth director before he was sentenced in 2016 to prison for child sex crimes. He was one of several people with ties to Southern Baptists who were named in a report out Thursday. (Kristofor Husted/The Midwest Newsroom)" />
 <figcaption>Parkade Baptist Church in Columbia, Missouri, is where Dale G. Johnson was a youth director before he was sentenced in 2016 to prison for child sex crimes. He was one of several people with ties to Southern Baptists who were named in a report out Thursday. (Kristofor Husted/The Midwest Newsroom)</figcaption>
 </figure>By STEVE VOCKRODT <a href="https://kansasreflector.com/2022/05/28/midwest-church-figures-on-southern-baptist-convention-list-of-accused-sex-abusers/">Midwest Newsroom</a>The Southern Baptist Convention on 
Thursday released a once-secret and lengthy list of accused sex abusers —
 several of whom are in the Midwest — within the denomination.The 205-page list is a compilation of
 ministers and other church workers who have been credibly accused of 
sexual abuse. The list is described as a “fluid, working document” that 
was also incomplete but largely pulls information about abusers from 
published news reports.The publication of the list comes 
after the release of a 300-page report by an independent investigator 
that described how leaders of the Southern Baptist denomination for 
decades have received reports of sexual abuse committed by church 
workers, pastors and others. But those reports were largely kept secret 
and, rather than acting upon and investigating reports of sexual abuse, 
denomination leaders sought to intimidate and vilify victims and their 
advocates.“The whole thing should be seen for 
what it is,” wrote former Southern Baptist Convention executive 
committee member and general counsel D. August Boto in an internal email
 that was published in the report. “It’s a satanic scheme to completely 
distract us from evangelism.”The crisis rocking the Southern 
Baptist denomination this week is similar in many ways to what the 
Catholic church continues to face. Leaders in both faiths systematically
 hid information about sexual misconduct, appeared to show more concern 
about their own legal liability than the victims and at times failed to 
expel accused abusers from positions of authority.In 2007, Father Thomas Doyle, a 
Catholic priest credited as one of the first to warn of his own 
denomination’s clergy sex abuse crisis, wrote a letter to SBC leadership
 conveying his concern that Southern Baptist leaders were repeating the 
failures of the Catholic church in dealing with sex abuse.Doyle was told, “Southern Baptist 
leaders truly have no authority over local churches,” a response that 
Doyle regarded as dismissive, according to the investigative report.That same year, at the SBC convention
 in San Antonio, Oklahoma pastor Wade Burleson made a motion to create a
 database of Southern Baptist clergy who had been convicted or credibly 
accused of, or had confessed to sexual abuse. The proposal was meant to 
“assist in preventing any future sexual abuse or harassment.”The database proposal appeared to go 
nowhere, according to the report, and witnesses at the convention 
recalled little about it except to express their opinion that it would 
“violate local church autonomy.”Ultimately, a staffer for the SBC 
executive committee since 2007 had maintained a list of accused 
ministers and church workers, but it was kept hidden from the public and
 even SBC executive committee trustees, according to the report.Southern Baptist leaders said 
publicizing the list of credibly accused abusers represented “an 
initial, but important, step towards addressing the scourge of sexual 
abuse and implementing reform in the Convention.”“Each entry in this list reminds us 
of the devastation and destruction brought about by sexual abuse,” said a
 joint statement from Willie McLaurin and Rolland Slade, both SBC 
executive committee members. “Our prayer is that the survivors of these 
heinous acts find hope and healing, and that churches will utilize this 
list proactively to protect and care for the most vulnerable among us.”Lawyers for the SBC executive 
committee researched the list of accused abusers, taking steps to verify
 information it contained. It left unredacted entries about alleged 
abusers that could be confirmed, while redacting entries where someone 
was acquitted or did not have a final disposition, as well as 
information that could identify victims.Missouri men feature prominently on the list. They include:<ul>
 <li>Robert
 Michael Black, a former pastor of New Home Baptist Church in St. 
Joseph, who solicited sex over Facebook from a police officer posing as a
 13-year-old girl. He pleaded guilty in 2011 to attempted child 
enticement, served five years in prison and was released.&nbsp;&nbsp;</li><li>Joseph
 Edmund Conger, former pastor of New Life Baptist Church in Cole Camp 
and First Baptist Church in Climax Springs, who was convicted in 2009 
and sentenced to seven years in prison for statutory sodomy for an 
incident with a teenager in 2003.&nbsp;</li><li>Michael
 Alan Crippen, a pastor at First Baptist Church in Duenweg, received a 
nearly four-year prison sentence for possessing child pornography.&nbsp;</li><li>Shawn
 Davies, a youth minister who worked in Greenwood and Ferguson, pleaded 
guilty in 2005 to several counts of sodomy, pornography and other 
charges and received a 20-year sentence to serve alongside a 10-year 
sentence for separate abuse charges in Kentucky.&nbsp;&nbsp;</li><li>Dale
 Gregory Johnson, former youth director for Parkade Baptist Church in 
Columbia, pleaded guilty in 2016 to sodomy and child pornography 
charges.</li><li>Terry
 McDowell, former pastor at Gateway Southern Baptist Church in St. 
Louis, pleaded guilty to molesting a 3-year-old in 2011 and received a 
suspended 10-year sentence.</li><li>James
 Niederstadt, a former pastor at Vinson General Baptist Church in 
Malden, received a 25-year sentence in 2000 following a conviction for 
forcible sodomy against a teenage girl who lived with him.&nbsp;</li><li>Travis
 Smith, a pastor at First Baptist Church in Stover and former youth 
pastor at Pilot Grove Baptist Church, received a four-year prison 
sentence in 2016 following convictions for statutory rape and other 
charges stemming from multiple victims.&nbsp;</li>
 </ul>Nebraska:<ul>
 <li>Klint
 Bitter, a former youth pastor with Christ Community Church in Omaha. He
 was convicted in 2018 of attempted sexual assault after arranging 
through an online classified ad to meet with an underaged girl for sex.&nbsp;</li>
 </ul>Kansas:<ul>
 <li>Kyle
 Guenther, a former minister at Harvest Baptist Church in Iola, was 
charged in Allen County in 2002 with molesting a teenage girl 
repeatedly, starting in 1999.&nbsp;</li><li>Kessler
 Lichtenegger, a teen volunteer at Westside Family Church in Lenexa, was
 convicted in 2015 of attempted rape and attempted electronic 
solicitation of a child younger than 14. He was sentenced to 17 years in
 prison.&nbsp;</li>
 </ul>Iowa:<ul>
 <li>Terry
 VanHoutan, leader of the adult ministry at First Baptist Church in 
Bettendorf, pleaded guilty to two sexual abuse charges in 2010, nine 
years after pleading guilty to indecent exposure.</li><li>Joel
 Mark Waltz, a youth pastor at Grace Community Church in Boone, pleaded 
guilty in 2017 to two counts of sexually exploiting a minor.&nbsp;</li>
 </ul>This story comes from the Midwest Newsroom, an investigative journalism collaboration including <a target="_blank" href="https://www.iowapublicradio.org/">IPR</a>, <a target="_blank" href="https://www.kcur.org/">KCUR 89.3</a>, <a target="_blank" href="https://nebraskapublicmedia.org/">Nebraska Public Media News</a>, <a target="_blank" href="https://news.stlpublicradio.org/">St. Louis Public Radio </a>and <a target="_blank" href="https://www.npr.org/">NPR</a>.

Kan, Mo., Neb. church figures among Southern Baptist accused abusers

By CINDY GONZALEZ <a href="https://nebraskaexaminer.com/2022/05/28/nebraska-government-building-to-be-renamed-for-chief-standing-bear/">Nebraska Examiner</a>

LINCOLN
 — A tired, 1960s-era government office building is about to be revamped
 and renamed in recognition of a Nebraska icon whose place in history 
also has seen a revival of sorts.

Come
 July, the Executive Building just west of the State Capitol will be 
officially dedicated as the Chief Standing Bear Justice Administration 
Building.

New
 flooring, modern lighting and other updates will be part of the 
$215,000 interior rehab of the five-story structure at 521 S. 14th St.

But
 upon entering the building, workers and visitors will see the more 
artistic and dramatic reminders of the tragedy-to-triumph story behind 
the building’s namesake.

Pivotal points in Standing Bear’s journey

Those
 elements include a bust of the Ponca chief that was created by sculptor
 Benjamin Victor and is to be displayed outside the main doors.

A
 signature mural spanning a main wall just inside the entrance is to be 
finished in the next few days by artist Sarah Harris. The painting 
offers passers-by a creative account of pivotal points in Standing 
Bear’s journey.

It’s those personal touches that thrill Judi gaiashkibos, executive director of the Nebraska Commission on Indian Affairs.

“I’m
 thrilled because they’re telling a story that is so dear to my heart,” 
she said. “Not all Nebraskans know the story of Chief Standing Bear.”

She
 said it seems so “absolutely appropriate” that the mural and the Chief 
Standing Bear memorial are associated with a building devoted to 
carrying out the operations of justice.

For Harris, who hails from Boise, Idaho, the mural was an inspirational voyage, as well.

Harris
 collaborated with Victor early on and had creative license to portray 
key moments from the chief’s life, starting with the Ponca Trail of 
Tears. To show the sadness, Harris used blue tones to paint the forced 
removal of the Poncas, under guard by U.S. troops, from their Nebraska 
homeland near the Niobrara River.

After
 that the viewer’s eye goes to a tragic scene of Chief Standing Bear 
grieving and holding his son Bear Shield, who was among those in the 
tribe who died in the aftermath of having to walk some 600 miles to arid
 Indian Territory in Oklahoma. Harris used monochromatic grays in that 
frame to capture the feeling of heavy loss, including Standing Bear’s 
despair over being told he could not return to bury his son in their 
ancestral lands.

Because
 Natives were not allowed to leave their reservation without permission,
 the Army arrested Standing Bear and his followers when he returned to 
bury Bear Shield’s remains in Nebraska.

“I
 can only imagine how broken he might feel,” Harris said. “And the 
design on the ribbon directly behind him — the same we’ve seen 
historically on his necklace — has been separated or broken apart.”

An
 abstract Niobrara River on the mural then separates the previous events
 with Chief Standing Bear standing in a Nebraska Supreme Courtroom for 
his triumphant 1879 moment. Also pictured are Nebraskans Gen. George 
Crook and journalist Thomas Tibbles.&nbsp;

Shown
 in full color in his court scene, Standing Bear gestures with his hand,
 urging justice. He argued that although the skin of his hand may be a 
different color, it also bled when pierced. His famous words: “The blood
 that will flow from mine will be of the same color as yours. I am a 
man. The same God made us both.”

Judge
 Elmer Dundy ultimately ruled in favor of Standing Bear, saying in the 
landmark case that the chief and members of his tribe should be 
considered “persons” under the law and therefore entitled to the rights 
of others.

Jason
 Jackson, director of the Nebraska Department of Administrative 
Services, said state officials thought Standing Bear was a fitting 
choice to honor, given that the building’s offices are occupied by 
professionals who support justice administration throughout the state.

He
 said the changes at the building are part of a broader initiative to 
recognize historic Nebraskans as the state upgrades state-owned 
properties.     

At Gov. Pete Ricketts’ request, State Sen. Tom Brewer introduced <a target="_blank" href="https://www.nebraskalegislature.gov/FloorDocs/107/PDF/Intro/LR271.pdf">the resolution</a>
 to rename the Executive Building as well as the former Woodmen Building
 at 1526 K St. That structure will be renamed the First Nebraska 
Administrative Building, after the First Regiment Nebraska Volunteer 
Infantry that fought for the Union during the Civil War.&nbsp;

The
 name change hopefully will help spark more discussion about other 
Native American icons and tribal stories, said gaiashkibos, a member of 
the Ponca Tribe. She said she’s been in the commission’s executive 
director <a target="_blank" href="https://indianaffairs.state.ne.us/">position for 27 years</a>, and in more recent years, she has watched the Standing Bear story reach new heights and audiences.

The
 Legislature, for instance, recently allocated funding for a Standing 
Bear documentary, and a new southeast Lincoln high school soon will bear
 the Standing Bear name.

Three
 years ago, a towering bronze statue of Standing Bear was installed in 
the U.S. Capitol’s Statuary Hall in Washington, D.C. Each state is 
allowed two notable residents to honor. The Nebraska Legislature voted 
to replace sculptures of William Jennings Bryan and J. Sterling Morton 
with statues of Chief Standing Bear and Willa Cather.

<figure>
 <img src="https://media.eaglewebservices.com/public/2022/5/1653842944744.png" alt="Sarah Harris paints a mural decorating hallway of a building to be renamed after Ponca Chief Standing Bear (Cindy Gonzalez/Nebraska Examiner)" />
 <figcaption>Sarah Harris paints a mural decorating hallway of a building to be renamed after Ponca Chief Standing Bear (Cindy Gonzalez/Nebraska Examiner)</figcaption>
 </figure>By CINDY GONZALEZ <a href="https://nebraskaexaminer.com/2022/05/28/nebraska-government-building-to-be-renamed-for-chief-standing-bear/">Nebraska Examiner</a>LINCOLN
 — A tired, 1960s-era government office building is about to be revamped
 and renamed in recognition of a Nebraska icon whose place in history 
also has seen a revival of sorts.Come
 July, the Executive Building just west of the State Capitol will be 
officially dedicated as the Chief Standing Bear Justice Administration 
Building.New
 flooring, modern lighting and other updates will be part of the 
$215,000 interior rehab of the five-story structure at 521 S. 14th St.But
 upon entering the building, workers and visitors will see the more 
artistic and dramatic reminders of the tragedy-to-triumph story behind 
the building’s namesake.<figure>
 <img src="https://media.eaglewebservices.com/public/2022/5/1653843010058.jpeg" alt="Bust of Chief Standing Bear to be displayed outside the building. (Courtesy of Department of Administrative Services)" />
 <figcaption>Bust of Chief Standing Bear to be displayed outside the building. (Courtesy of Department of Administrative Services)</figcaption>
 </figure><h2>Pivotal points in Standing Bear’s journey</h2>Those
 elements include a bust of the Ponca chief that was created by sculptor
 Benjamin Victor and is to be displayed outside the main doors.A
 signature mural spanning a main wall just inside the entrance is to be 
finished in the next few days by artist Sarah Harris. The painting 
offers passers-by a creative account of pivotal points in Standing 
Bear’s journey.It’s those personal touches that thrill Judi gaiashkibos, executive director of the Nebraska Commission on Indian Affairs.“I’m
 thrilled because they’re telling a story that is so dear to my heart,” 
she said. “Not all Nebraskans know the story of Chief Standing Bear.”She
 said it seems so “absolutely appropriate” that the mural and the Chief 
Standing Bear memorial are associated with a building devoted to 
carrying out the operations of justice.For Harris, who hails from Boise, Idaho, the mural was an inspirational voyage, as well.Harris
 collaborated with Victor early on and had creative license to portray 
key moments from the chief’s life, starting with the Ponca Trail of 
Tears. To show the sadness, Harris used blue tones to paint the forced 
removal of the Poncas, under guard by U.S. troops, from their Nebraska 
homeland near the Niobrara River.<h2>Walks some 600 miles to bury his son</h2>After
 that the viewer’s eye goes to a tragic scene of Chief Standing Bear 
grieving and holding his son Bear Shield, who was among those in the 
tribe who died in the aftermath of having to walk some 600 miles to arid
 Indian Territory in Oklahoma. Harris used monochromatic grays in that 
frame to capture the feeling of heavy loss, including Standing Bear’s 
despair over being told he could not return to bury his son in their 
ancestral lands.Because
 Natives were not allowed to leave their reservation without permission,
 the Army arrested Standing Bear and his followers when he returned to 
bury Bear Shield’s remains in Nebraska.“I
 can only imagine how broken he might feel,” Harris said. “And the 
design on the ribbon directly behind him — the same we’ve seen 
historically on his necklace — has been separated or broken apart.”An
 abstract Niobrara River on the mural then separates the previous events
 with Chief Standing Bear standing in a Nebraska Supreme Courtroom for 
his triumphant 1879 moment. Also pictured are Nebraskans Gen. George 
Crook and journalist Thomas Tibbles.&nbsp;Shown
 in full color in his court scene, Standing Bear gestures with his hand,
 urging justice. He argued that although the skin of his hand may be a 
different color, it also bled when pierced. His famous words: “The blood
 that will flow from mine will be of the same color as yours. I am a 
man. The same God made us both.”<h2>‘First people deserve to be known’</h2>Judge
 Elmer Dundy ultimately ruled in favor of Standing Bear, saying in the 
landmark case that the chief and members of his tribe should be 
considered “persons” under the law and therefore entitled to the rights 
of others.Jason
 Jackson, director of the Nebraska Department of Administrative 
Services, said state officials thought Standing Bear was a fitting 
choice to honor, given that the building’s offices are occupied by 
professionals who support justice administration throughout the state.He
 said the changes at the building are part of a broader initiative to 
recognize historic Nebraskans as the state upgrades state-owned 
properties. At Gov. Pete Ricketts’ request, State Sen. Tom Brewer introduced <a target="_blank" href="https://www.nebraskalegislature.gov/FloorDocs/107/PDF/Intro/LR271.pdf">the resolution</a>
 to rename the Executive Building as well as the former Woodmen Building
 at 1526 K St. That structure will be renamed the First Nebraska 
Administrative Building, after the First Regiment Nebraska Volunteer 
Infantry that fought for the Union during the Civil War.&nbsp;The
 name change hopefully will help spark more discussion about other 
Native American icons and tribal stories, said gaiashkibos, a member of 
the Ponca Tribe. She said she’s been in the commission’s executive 
director <a target="_blank" href="https://indianaffairs.state.ne.us/">position for 27 years</a>, and in more recent years, she has watched the Standing Bear story reach new heights and audiences.The
 Legislature, for instance, recently allocated funding for a Standing 
Bear documentary, and a new southeast Lincoln high school soon will bear
 the Standing Bear name.<figure>
 <img src="https://media.eaglewebservices.com/public/2022/5/1653843048709.jpeg" alt="Illustration that helps guide creation of Standing Bear mural (Cindy Gonzalez/Nebraska Examiner)" />
 <figcaption>Illustration that helps guide creation of Standing Bear mural (Cindy Gonzalez/Nebraska Examiner)</figcaption>
 </figure>Three
 years ago, a towering bronze statue of Standing Bear was installed in 
the U.S. Capitol’s Statuary Hall in Washington, D.C. Each state is 
allowed two notable residents to honor. The Nebraska Legislature voted 
to replace sculptures of William Jennings Bryan and J. Sterling Morton 
with statues of Chief Standing Bear and Willa Cather.“As more people learn <a target="_blank" href="https://history.nebraska.gov/blog/standing-bear">the story</a>,
 they’re inspired,” gaiashkibos said of Standing Bear. “It’s an 
opportunity for other tribal stories to be told, as well. Our first 
people deserve to be known.”