Educating During SMA Awareness Month
With one in 40-50 people carrying the Spinal Muscular Atrophy (SMA) gene, most unknowingly, this genetic disease could affect many people without them realizing it. If both parents are carriers of the SMA gene, their child has a 1 in 4 chance of having the disease. And for the parents of a child with SMA (or adults with SMA themselves), this disease is something that affects their every day.
To bring greater knowledge and understanding to the general public and move closer to a cure, August is SMA Awareness Month. Currently, there are believed to have been as many as 10,000 to 25,000 children and adults in the United States with SMA – making it the “most common rare disease.”
PHS provides care at home for patients with SMA to ensure their lives continue seamlessly and healthy alongside family. You can learn more about PHS patient Mary Kate’s life with SMA in this video, and read more about SMA and what you can do this month through these resources:
Cure SMA: Here, you can find more information on SMA, the FSMA newsletter, details on the annual conference held, and an incredible amount of support for anyone who knows someone with SMA.
SMA Foundation: Since it started in 2003, the SMA Foundation has conducted research to accelerate progress toward finding a treatment for SMA. You can learn more about the clinical research they’ve done, as well as other drug research and developments being made.
The Gwendolyn Strong Foundation: theGSF is an organization dedicated to increasing global awareness of SMA. It was created when Bill and Victoria Strong’s daughter was diagnosed with SMA Type 1 at 6 months old, and from there, they have gone on to advocate, educate, and build a community around individuals with SMA. You can learn more about what they do, read their blog, or explore upcoming opportunities to be involved.
Do you have any other organizations to add to this list? We always love to be able to provide families with the most expansive tools related to their child, and find that parents and caregivers are often great resources themselves.Originally published: August 1, 2014