Walking to find a cure for Spinal Muscular Atrophy

By AMY ADAMS
news@readthereporter.com

What started as a way to celebrate Graham Vollmer’s birthday has become an annual event with far-reaching impact.

When Graham was born in 2015, parents Adrienne and Nick Vollmer noticed that he had weakened muscles throughout his body. It took about eight weeks for specialists to officially diagnose their third child with Spinal Muscular Atrophy.

At the time, doctors could offer the Vollmers no treatment options and no cure.

“They told us to make the best of our time with him and that he probably wouldn’t see his second birthday,” Adrienne said.

A rare genetic condition, SMA affects around 1 in 10,000. While there are four types, the earlier the age of onset, the greater the impact on motor function. Infants like Graham who show symptoms from birth are considered Type 1, which can affect the ability to sit, crawl, walk, and even breathe.

Thankfully, Graham qualified for a clinical trial at Lurie Children’s Hospital of Chicago. The repeated trips and lumbar injections proved to be worth it.

Graham’s second birthday brought cause for celebration. A group of friends helped the Vollmers organize the first Cure SMA Walk for Graham in May of 2017.

“It was a milestone we didn’t think he would meet,” Adrienne said.

That first walk drew 400 people and raised more than $81,000 for Cure SMA, a national advocacy program that directs funds to support those diagnosed with the disease and their families.

By the second walk in May 2018, Graham’s Bill had been signed into law by Governor Eric Holcomb. The bill, for which Adrienne had testified and worked with State Rep. Doug Gutwein, added SMA to the Indiana State Newborn Screen.

Because of the partnership of people like the Vollmers with Cure SMA, 99 percent of babies born in the U.S. are screened for SMA. Forty-eight states plus Washington, D.C. have instituted screening at birth. Only Nevada and Hawaii do not as of Feb. 22, 2023.

In addition, Cure SMA invests in groundbreaking research that has led to approval of three treatments for SMA since Graham’s initial prognosis. The first was Spinraza from Biogen, the medication from Graham’s first trial. In 2019, Novartis medication Zolgensma received FDA approval.

In January 2021, Graham began taking Evrysdi, a medication from Genentech released in August 2020. A once-a-day oral liquid, Evrysdi is the only treatment for SMA that can be taken at home.

“‘Making a difference’ would be a very big understatement,” Adrienne said. “It’s really wonderful, not just for Graham, but for everyone with SMA.”

Now eight years old, Graham is a student at Maple Glen Elementary School in Westfield in a mainstream classroom with an IEP and the help of his full-time nurse to provide any accommodations he needs.

“Graham is doing amazing,” Adrienne said. “He just has such a positive outlook. He never gets frustrated by what he can’t do, he just gets excited about what he can do.”

For this year’s walk, he wants to coordinate a dance with his friend Annie. Annie’s mom, local realtor Erin Watts, is one of an 11-member committee who helps plan and execute the annual walk that continues to grow each year. Many of the children of committee members, including Graham’s older siblings, Ben and Lucy, even have “side-hustle” fundraisers.

“It has been rewarding to see as a mom,” Adrienne said.

Though the annual event has moved from May to August, it continues to honor Graham. It also brings together SMA families with its commemorative one-mile walk-and-roll that represents the community coming together to offer support and fight for a cure.

Last year, 850 participants raised nearly $170,000. They also welcomed more than 20 families affected by SMA. Registration is free for these families, and there is a special lounge where they can gather.

“We really try to treat them like the guests of honor,” Adrienne said.

The seventh annual SMA Walk for Graham will kick off at 4 p.m. on Aug. 5 with ballpark-style food, a play zone for kids, and more at Coxhall Gardens at 11677 Towne Road, Carmel. Following a 6 p.m. opening ceremony on their giant new stage, the walk-and-roll will begin around 6:30 p.m.

The raffle and silent auction, which will include a Blackstone grill, will close at 7:30 p.m., and the event will conclude around 9 p.m.

Registration is $30 and includes food and drinks, a goodie bag, and an exclusive event T-shirt. Register as an individual, create a team, or become a sponsor, at this link.