2019 Cure SMA Northern California Walk-n-Roll
Welcome to My Personal Page
As many of you know, I have SMA Type 3. I was diagnosed at the age of 23 when I finally asked why I wasn't getting stronger when I was dedicating all of my free time trying to gain strength. I grew up with symptoms all of my life, never knowing what it was and doctors dismissing my parents complaints that something could be wrong, stating that I would "grow out of it."
Cure SMA educates people about SMA while researching treatments. I have been on Spinraza for over a year now and have seen drastic improvements. For example, I can squat now. Cure SMA had a hand in this and helping me gain access to this medication. They also connected me with other families when I was first diagnosed and felt completely alone. Recently, they sent me an adult care package which included items to help make my life a lot easier.
Most doctors still don't know what SMA is or have the slightest idea what to do when it comes to a patient with the disease. There are also several types a lot worse than what I have and my future kids could be affected. While treatments are becoming available, we are getting closer to a cure. Education and knowledge about this disease is important!
I am fundraising for Cure SMA because they are leading the way to a world without spinal muscular atrophy. SMA is the number one genetic cause of death for infants and 1 in 50 people in the United States is a genetic carrier.
SMA impacts the lives of thousands of people and Cure SMA is an irreplaceable resource. By providing services like care packages for newly diagnosed families, teens, and adults, local Summit of Strength programs, an equipment pool, and the Annual SMA Conference - Cure SMA supports the community as they navigate life with SMA. Cure SMA has also invested more than $75 million in research and has funded half of all the ongoing new drug programs for SMA, including Spinraza, the first-ever approved therapy for SMA.
Join me by registering or donating today! Any donation will help to support Cure SMA so they can keep providing these important programs and services for me and the community.
Thank you for joining me in the fight against SMA!