We have been able to donate over $7,500 to organizations that directly support Spinal Muscular Atrophy research. We are blessed to have been able to make these generous donations, and could have never done it with out the support from wonderful people like you!!!! Many hugs and Many thanks!!
The 200 For SMA
Unite 4 Peyton has made the commitment, and already FULLFILLED the commitment to raise $6,000 to go directly to Dr. Kasper's gene therapy.
"To raise as a community the $1,000,000 needed to take the work of The SMA Gene Therapy program from Nationwide Children’s Hospital/Ohio State University out of the Lab and into the SMA Patient Population
This revolutionary research has the potential to cure Spinal Muscular Atrophy, as well as various other Neurological diseases. The earlier we can get into the SMA patient population, the greater the chances of rescuing the remaining motor neurons. The longer we wait, the greater the motor neuron loss in our SMA patient population. The time is NOW to stop the progression of the disease. Based on initial non-binding talks with the Food and Drug Administration there is a realistic timeline of what is necessary to ensure this program reaches human clinical trials. This program can reach Phase 1 in 12 months if the funding gap is closed. Based on Pre IND talks with the FDA and the studies they have deemed necessary roughly $1,000,000 is needed.
We are asking for 200 commitments, every commitment is $5,000. We need 200 commitments within the next 12 months- for a total of $1,000,000 – with 100% of the proceeds going directly to fund Dr. Kaspar and the Gene Therapy program at Nationwide Children’s Hospital/OSU." www.the200forsma.com
Dr. Mary Schroth,
Dr. Schroth is the Director of the Pediatric Pulmonary Center Grant at the American Family Children’s Hospital, University of Wisconsin School of Medicine and Public Health in Madison. She is also an Associate Professor of Pediatric Pulmonology on the faculty at the University of Wisconsin. She has been instrumental in developing a leading respiratory care program for children with neuromuscular disease and, with colleagues, in developing a multidisciplinary neuromuscular clinic. She played a pivotal role in the development of the Consensus Statement for Standards of Care in SMA. As a specialist in SMA respiratory care and an educator, Dr. Schroth is a leader in the SMA community and with Families of SMA. We wouldn’t want another Dr. to treat Peyton, other than Dr. Schroth.
Families of SMA
FSMA, played a vital role for our family when Peyton was first diagnosed. When we were in shock and had no idea what SMA even was, FSMA was there to help us. They are like a "welcoming" committee to Spinal Muscular Atrophy. They provided us with the necessary tools and information that we needed to get moving in the right direction. "In 1984, a small group of parents across the country banded together to support, comfort and educate each other about the devastating disease affecting their children; Spinal Muscular Atrophy. Their purpose was twofold—to support families affected by SMA and to fund research leading to a treatment and eventually, a cure. Families of SMA has grown from this courageous group of families to an international network of fundraising and support including 30 volunteer Chapters throughout the United States.
Since 1984, our legacy is one of unparalleled research progress and patient support, from grassroots fundraising to global scientific leadership. Families of SMA has funded over $50 million of SMA research in three areas: Basic Research, Drug Development and Clinical Trials."
We are continuing to fundraise, and look forward to making more donations over the next year!!!! Thank you again to everyone that has helped us get to this point!! I look forward to the day we find the cure!!!!!