Culture
Adyn’s Dream Brings Dustbowl Revival, The Tillers, Doc Robinson to OU Feb. 10
By: Emily Votaw
Posted on:
Adyn’s Dream is a local charity that raises funds for families living with spinal muscular atrophy, a neuromuscular disorder that damages motor nerve cells that exist deep in the spinal chord, making it an enormous physical undertaking for sufferers to do things that the rest of us take for granted — like running, swimming, and even easy breathing.
The group has been bringing one after another stunning musical act into the area for lively fundraisers, and 2018 is no different. Saturday, February 10 will mark the second time that the organization has partnered with Ohio University to bring a fantastic show to the stage of the Templeton-Blackburn Alumni Memorial Auditorium for a good cause. This year the show will feature The Dustbowl Revival, The Tillers, and Doc Robinson. Tickets are only $20 in advance, and $25 at the door, and can be purchased here.
WOUB’s Emily Votaw had the opportunity to speak with Zach Lupetin, the frontman of The Dustbowl Revival, just about a week prior to the band’s performance in Athens. The two talked about falling in love with the music of Bob Dylan, what it was like to build what many refer to as a ‘Americana orchestra,’ and his very first epic recording, which he completed while still in undergrad.
Although the February 10 show is sure to be stunning, it is beyond a shadow of a doubt that the truly stunning thing about the performance is the cause for which it is raising funds. As previously explained, Adyn’s Dream works to raise funds for families living with the debilitating condition that is spinal muscular atrophy (SMA). Last year alone, the group spent over $18,000 in direct support and assistance to families dealing with the illness. Brian Bucher, (father to the namesake of the organization, the music-and-Harry-Potter-loving Adyn,) said that Adyn’s Dream was able to sponsor six families last year to attend their very first Cure SMA conference, which took place in Disney World.
“Over the last two years, we have sponsored 10 families to attend this life-changing conference, which amounts to about $15,000 spent to help these families,” said Bucher. “The conference is one of the very few opportunities where children with SMA can meet other children with SMA, very often the first time they will have met another child in a power wheelchair and similar struggles, and parents can network with other parents. It also gives parents the opportunity to become familiar with the different types of therapies as well as meet with the scientists and doctors on the front line of fight against SMA. We remember our first conference, and it changed our lives. It is an incredible experience in which words fall short in explaining its impact.”
This year Adyn’s Dream is working with Cure SMA to craft a special evening of entertainment for the conference, and although Bucher can’t give out too many details, it’s apparent that Adyn’s Dream is becoming more and more recognized as one of the most active and accomplished SMA charities in the country — as they have been named the gold sponsor of the 2018 Cure SMA conference, which will take place in Dallas, TX.
Last year Adyn’s Dream executed their first Secret Santa Giveaway, which allowed folks to nominate someone living with SMA and to let the organization know what that person’s dream holiday gift might be. Bucher said they received 35 nominations and purchased gifts for each one, ranging from iPads to adaptive living equipment to money for tickets to Broadway shows.
“(We) gift wrapped each present, repackaged them, and shipped them to the recipient! We then received videos and pictures as these individuals opened their surprise gift,” said Bucher. “It was unbelievable and definitely the most moving and impactful project we’ve done. We hope to raise enough money this year that would allow us to do this again!”
It was only recently that any one drug was approved for the treatment of SMA. In December of 2016, the FDA approved nusinersen (marketed as Spinraza,) as a drug to be administrated directly into the central nervous system intrathecally. After a long and arduous back and forth with their insurance company, Adyn was ultimately denied for coverage to begin the potentially life-altering (and incredibly costly) treatment, the insurance company stating that the drug was “not medically necessary.”
“After multiple appeals, providing them (the insurance company) multiple pieces of data from the same studies that convinced the FDA it was necessary and safe, they continued to deny coverage,” said Bucher. “Thankfully, the company that created the drug, Biogen, has a program to provide the treatment for free for those individuals who have been denied by their insurance companies – as this is not an isolated issue around the country. Last week, Adyn received her fourth dose via a lumbar puncture – a.k.a. spinal tap, and we are excited to see it’s impact as time continues. Our struggle is by no means unique. SMA families and individuals are fighting insurance companies all over the country for this, in many cases, life saving treatment.”
Bucher has big goals for Adyn’s Dream in 2018, including the expansion of the Secret Santa Giveaway and a goal to sponsor even more families to attend their first Cure SMA conference. He said that the Saturday, February 10 concert will the the organization’s biggest fundraiser of the year.
“This is definitely our biggest and most important fundraiser of the year! We are in need of people coming out and showing their support, all while enjoying one of the biggest and best concerts we’ve had the opportunity to host! Three great bands for only $20, we intentionally set ticket prices low to make the concert as accessible to as many people as possible. Because of this, we are relying on a great turnout in order to allow Adyn’s Dream to meet our goals in 2018!” said Bucher, who said there will also be another fundraiser on Wednesday, February 28 at the Ohio University Women’s Basketball game. “As some people know, this is Adyn’s fourth year on the OU Women’s team, and she will be recognized as one of the two seniors this year on the team. They are also working to turn that into a fundraiser for Adyn’s Dream! Also, there are students at OU who are running in the Race for a Reason on behalf of Adyn’s Dream! We absolutely LOVE & cherish our involvement with certain organizations in the Ohio University community!”
Bucher said that people can stay up to date with that the organization is doing on their Facebook page, which is updated frequently.