'If everyone donated $5, the hope is Nash and 4-11 others with his condition will be alive to celebrate Nash's fourth birthday' by funding the actual treatment.
Brittany StinemanAccording to their site, the vision of the organization is to “envision a world where individuals with rare diseases and their families are no longer told there are no medical treatments available. Our organization wants to be there to support these orphan causes, to give hope to families, and to be a leader in driving research.
, they’ve already been contacted by five other families. “I believe this disease is more prevalent than we think,” Stineman said. She says her son’s diagnosis is often confused with Spinal Muscular Atrophy which“Nash doesn’t have traditional SMA. Those treatments do not work for him, he doesn’t qualify,” she explains. “We are trying to build awareness for SMARD and let people know that for those diagnosed, the responsibility to fund treatment is 100 percent on the families and the nonprofit”.
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