Rare Disease Advocates Commemorate Worldwide Awareness Day at the Michigan Capitol

So honored to take part in Rare Disease Day Michigan today as a speaker, sharing our story about SMA, at the Michigan State Capitol. Legislators, legislative staff, the public and the media came together to raise awareness at the state level for the 1 in 10 individuals living in Michigan with a rare disease and the challenges they face. There are nearly 7,000 such diseases affecting nearly 30 million Americans, according to the National Institutes of Health (NIH). Participating Organizations/Diseases Included: Amyloidosis Foundation, Cystic Fibrosis, Homozygous Familial Hypercholesterolemia, Lambert-Eaton Myasthenic Syndrome, Lysosomal Storage Disorders, Mowat-Wilson Syndrome, Pompe Disease, Rubinstein Taybi Syndrome, Shwachman-Diamond Syndrome, Spinal Muscular Atrophy and Syndromes Without A Name (SWAN).
Huge thanks to Rep. Aric Nesbitt for attending and starting off the event with a great speech!  
Thank you Cure SMA for sending SMA materials for us share at the event to help spread awareness!