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!

ABC NEWS: How Two Young Sisters Cope With a Rare Muscle Wasting Disease


We are SO honored our journey with SMA is being featured by ABC News! Hooray for spreading awareness about rare diseases, specifically Spinal Muscular Atrophy! Rare Disease Day is February 28th.  


ABC News' Dr. Richard Besser and The National Organization for Rare Disorders, Inc. (NORD) are co-hosting a tweetchat today from 1-2pm, ET on the topic of Rare Diseases. Join in on the conversation by using the hashtag #abcdrbchat