OUR MISSION at SMA United for Treatment Options is advocating for new and emerging treatment options to improve the lives of those living with Spinal Muscular Atrophy (SMA).
We are the only organization that is exclusively made up of patients and families with SMA. Our unique presence and voice fills the void that exists in the current system and bridges the gap among researchers, medical providers, pharmaceutical companies, regulatory bodies, and multi-layered/multi-purposed organizations like CureSMA.
We serve as a communication vehicle, by relating our community's needs to parties of interest and by providing accurate and timely information back to the community.
Our goal is to be an equal partner, have a proactive role, and be part of the decision making process every step of the way.
WHAT WE DO
Providing a unique presence & voice
Engagement & Coordination
"We believe that EVERYONE with SMA, regardless of age and type, should have the right to access currently available and future treatments."
Having input from SMA United is imperative in ensuring overall success with drug therapies and a win-win situation for everyone!
As a mother of a young adult with SMA, Ana has extensive knowledge and experience in advocating for the SMA community. Her passion is in new and emerging therapeutic approaches to treating SMA. She is well known for her leadership role within the FAST movement. Ana works full-time for Hennepin County, MN.
Francisco has Type 3 SMA and lives in Texas. He works full time as an operations manager in the construction industry. In his free time he likes to read about building science and economics. He is a dad to 2 girls and 1 boy and enjoys spending his free time cooking and fishing. Francisco is also known for his weakness for tacos.
John is president of The John Kerr Foundation, a nonprofit for those living with Muscular Dystrophy. The Foundation vision is to enhance the lives of others living with MD through the awarding of educational scholarships, the promotion of adventure-related activities, and facilitating an annual Summer Retreat, which allows young adults with MD to fully enjoy the outdoors and gain life-enhancing skills. John lives in Sacramento with his wife, and has many hobbies including a love of sports, music, politics, traveling and has experienced a number of adventures, including snorkeling, swimming with dolphins, and whitewater rafting.
Drop us a line with your questions, comments or ways in which you'd like to collaborate.
Meet the TEAM
A fourth generation Floridian, Mary and her husband Steve, have raised 5 children. Their third was diagnosed with SMA at 8 months. With intensive research, networking, traveling, and constant prayer, they found hope. Mary created the Amino Acid diet for SMA, which has now helped hundreds of SMA patients around the world. She is one of the founding members of FAST movement. Mary believes all life has value and is passionate about advocating for those most vulnerable.
Social Media & Marketing Manager
Diana has SMA Type 2-3 and works full time as a Revenue Analyst. Born and raised in Spain to Hungarian parents, she has been living in Orlando, FL for almost 20 years. Multilingual and driven, Diana is passionate about upcoming treatments for Spinal Muscular Atrophy and doesn't usually take "no" for an answer.
Graphic Design & Merchandising
Originally from Rome, Italy, Nicole lives in Long Beach California. She works full time as a Graphic Design and Marketing Strategy Specialist. In her free time, Nicole loves to work out, swim, enjoys the fresh outdoors and a healthy lifestyle. She likes to spend time with her loving husband, her very active young daughter, wonderful mother and dog.