Justin Clark (13) and Lexi Clark (9) from Bellaire, Texas were diagnosed with Giant Axonal Neuropathy (GAN) last year. This rare, genetic disorder has only 53 documented cases of children and young adults still living worldwide. Without money for research to find a cure, Justin and Lexi’s life expectancy is in their early 20s as they will lose their ability to walk, eat, and breath as this degenerative disease progresses and slowly takes away vital abilities. The Clark Family started their organization Justin’s TRIumph Over GAN in 2013 and joined forces with the national GAN research fundraising group, Hannah’s Hope Fund. HHF was founded in 2008 when Lori and Matt Sames discovered their daughter, Hannah (10), had GAN. They have raised $6 million for GAN research and are close to being able to start the first clinical trial for GAN.
The Clark family has joined HHF fundraising efforts with triathlon sponsorships, concerts, garage sales, luncheons and various other fundraising efforts. This is the inaugural “Allies for GAN” gala and they hope it is an annual event. You can find out more about the Clarks on their site http://www.justinstriumph.org or http://www.hannahshopefund.org.
230 friends and supporters of Justin’s TRIumph Over GAN:
- Clark Family – Justin, Lexi, Jared, Lagenia, and David
- Dr. Steven Gray and his wife Christy –Leading GAN researcher from UNC
- Hannah Sames and her family (Dad- Matt, Mom-Lori, Sisters Reagan and
- Madison) from NY
- Andrew and Linda Bosarge of the Texas Flying Legends Museum
- Honorary Chairs Mark and Monique Boling
- Jeryl Golub, Aileen McCormick and Barb Ostdiek, Co-Chairs of the Event
On Saturday, November 8th, Justin’s TRIumph Over GAN (http://www.justinstriumph.org) hosted its inaugural gala and auction titled “Allies For GAN.” They raised over $130,000 for Hannah’s Hope for GAN. The event was held at the Texas Flying Legends Museum (http://www.texasflyinglegends.org) and featured a WWII 1940s theme complete with GAN Bomber specialty drinks and cuisine. Guests began their evening with a special performance from the St. Agnes Guests will be treated to music styling’s of the Third Coast Swing band (http://www.swinghouston.com) and had the opportunity to explore some of the museum’s plane collection. The event featured a lively silent and live auction. Highlights included two separate flights in original P-51 Mustang WWII plane, packages for trips to Colorado, Galveston, a weekend stay at a home in Round Top for antique week, and much more. One of the favorite highlights of the evening was the exclusive bracelets provided by M and A Stones, company started by two 16 yr old girls. They donated 50 bracelets that were sold for the Heads or Tails game. The winner received a new ipad Air.
The “Allies For GAN” Gala featured guest speaker Dr. Steven Gray. Dr. Gray is a researcher at UNC and has created what everyone hopes will halt progression of the disease once the FDA begins a clinical trial. Towards the end of the evening, Hannah surprised everyone with a cappella version of Kelly Clarkson’s “Since U Been Gone,” which moved the whole audience. Proceeds from the gala and auction all go toward funding research to find a cure for GAN.
“Cigarette Girls” Reagan Draper (L), Julianna Cantrell, Kincaid Dwyer, Scarlett Dwyer, Madison Sames, Reagan Sames, Olivia Golub, and Madison Dodson sold exclusive bracelets provided by M & A Stones for the Heads or Tails Game
Dressed to fit the WWII theme, the St. Agnes Academy Performance Workshop performed at the Allies for GAN Gala. They are pictured here with director Jeremy Woods. Andrew and Linda Bosarge, who own the Texas Flying Legends Museum have a daughter who attends St. Agnes
Twin brothers, Justin and Jared Clark, celebrate the success of all their family and friends work at the Allies for GAN Gala. Justin was diagnosed with GAN in 2013 and wore his grandfather’s WWII Eisenhower jacket to the WWII themed event
Clark Family, David (L), Justin (wearing his grandfather’s WWII Eisenhower jacket), Lagenia, Jared, and Lexi. The Clark family founded Justin’s TRIumph Over GAN and has partnered with Hannah’s Hope Fund to find a cure for GAN after Justin and Lexi were diagnosed with GAN in 2013
Lori and Hannah Sames get ready to educate about GAN at the Allies for GAN Gala. Hannah has GAN and is the inspiration behind Hannah’s Hope Fund, the national foundation raising money for research to cure GAN
Chris Canonico (L), Lauren Soliz (Logistics Chair), Candy and John Lillibridge attend the Allies for GAN Gala
Lori Sames let the 230 in attendance know about how to find a cure to GAN. Lori is the founder of Hannah’s Hope Fund, the national foundation raising money for research to cure GAN. Her daughter, Hannah, was diagnosed with GAN in 2008
Amanda and Joseph Sorena take the opportunity to climb into a P-51 Mustang at the Allies for GAN Gala held at the Texas Flying Legends Museum. A once-in-a-lifetime flight in this WWII plane was auctioned off at the event
The Boot Camp Girls – Barb Ostdiek (Co-chair), Jeryl Golub (Co-chair), Lisa Derenthal, Kim Sanford, Aileen McCormick (Co-chair), Jen Ward, Alicia Harrison, Kay Harrison and Sandy Rodriquez at the Allies for GAN Gala
*Photos by Kraitman Photography (http://kraitmanphotography.printroom.com)