Rumi & 21,000 Steps to Cure Spinal Muscular Atrophy
My son Rumi is a little boy with a beautiful soul. On Friday, the 13th of September, he was diagnosed with Spinal Muscular Atrophy (SMA). SMA is the number one genetic cause of death for infants. 1 in 50 people in the United States is a genetic carrier. Despite that unlucky day, we have recently been lucky with a wonderful team at BC Children's Hospital, CureSMA support, and a game changing medicine.
On Friday, the 1st November, Rumi was able to access one of the first gene therapies ever approved - Spinraza. Each treatment with Spinraza costs approximately $120,000. It is an orphan drug for an orphan disease. In most provinces in Canada, we are lucky that this healthcare is provided for us. Yet, more children need access and more research needs to be done. It is a treatment, not a cure.
I am a running for my son.
I am raising money for CureSMA through the NYC Half Marathon 2020. This supports children with SMA by opening access to a life-saving medicine and by funding research for a cure. There are 21,000 steps in a half marathon. I'm hoping for 10 cents a step. Every extra dime is a step towards a cure. A step to help children walk, breathe, and live their best lives. Give a big hug to someone you love and appreciate every step you take. If you want to join us in our fight for SMA children, you can take a step here: http://fsma.convio.net/site/TR/Marathon/General?px=1339005&pg=personal&fr_id=3575
If you are the sciencey type, this video is a great overview of how Spinraza (nusinersen) the gene therapy works: https://www.youtube.com/watch?v=YLluIVwg_y4
Gill & Rumi