Culture
Adyn Dreams Bigger Than Ever Before
By: Emily Votaw
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Saturday, Feb. 11 will be a big day for Adyn’s Dream, a local non-profit that raises funds for families living with spinal muscular atrophy (SMA). SMA is a rare and often fatal disease that attacks motor nerve cells in the spinal chord, robbing those diagnosed with the illness of their physical strength.
Besides bringing acclaimed Americana star Pokey LaFarge back into the Southeast Ohio region for an intimate evening show just weeks before the release of his eighth full-length, Manic Revelations; Adyn’s Dream is also holding a full-fledged afternoon Kid’s Art Carnival with an interactive set by mountain swing outfit The Judy Chops Saturday afternoon.
“Honestly, I’m just as excited about (the art carnival) as I am about the Pokey show,” said Brian Bucher, the father of the non-profit’s namesake and the executive director of organization.
Bucher said that the group is bringing in eight artists associated with Athens-based Guardian Aliens to work with kids throughout the afternoon on a variety of art projects, including wheelchair painting, sand art, face painting, and more.
“The artists are going to work side-by-side with the kids in creating a big mural which will hang up during the Pokey show; and we’re going to do wheelchair art — which is one of Adyn’s favorite things to do,” said Bucher.
Bucher said that he is grateful for the participation of Guardian Aliens in organizing the day’s art activities.
“Jerod (Black) and his crew has been instrumental in helping this get off the ground,” said Bucher. Black is also supplying the event with an original airbrushed take on the Adyn’s Dream rainbow logo, (entitled “Guardian Adyn,”) which will be raffled off after the Pokey LaFarge performance Saturday evening. Prints of the work will be available for purchase, as well as included with the purchase of two raffle tickets.
Bucher said that Saturday’s event is the largest one that Adyn’s Dream has undertaken so far.
“The fact that Ohio University Performing Arts approached us and offered to donate this space to us for an event is immense,” said Bucher, who distributed some 3,200 flyers about the event to Athens City Elementary and Middle Schools, as well as Alexander Elementary and Middle School, last week.
A large part of Adyn’s Dream’s mission is sending families to the annual Cure SMA conference, taking place this year at Disney World in Florida. The conference is more than a place for families to gather information on their child’s illness – it is also a rare chance for children with SMA to befriend others dealing with the same disease; as well as a place for families to feel they are among those who understand the unique issues that face SMA families.
In 2016, Adyn’s Dream raised enough funds to send four families to the conference. This year, Bucher said that Adyn’s Dream will sponsor six families; their gift to each family including a conference-long stay at the Disney World Contemporary Resort, gifts for the kids, $200 gift cards for each family for meals while they are at the conference, and their registration fees.
“We just learned that we are going to be one of the conference’s gold sponsors,” said Bucher, who said that the overall donation that the organization will provide this year will amount to $10,000. “We’re really excited to be able to make an impact like this.”
The 2017 SMA Conference is going to be particularly important this year because in December 2016, the FDA approved the first ever drug designed to directly treat the illness.
“It’s groundbreaking on a number of levels,” said Bucher, who said that the drug, Spinraza (nusinersen), has yet to be widely available, but has been massively successful in treating SMA in trials.
“We’re really excited about being able to give families the experience of attending the conference,” said Bucher. “It truly is an unbelievable experience for the kids, parents and siblings.”
The Adyn’s Dream Kid’s Art Carnival will kick off on the stage of the Templeton-Blackburn Alumni Memorial Auditorium at noon on Saturday, and last for approximately two hours. Entry is by donation. For more information, visit adynsdream.org or the organization’s Facebook page. Pokey LaFarge will play the same space later that night, starting at 7:30 p.m. Tickets are $20 in advance and $25 at the door. For more information, visit Ohio University’s Performing Arts webpage.
