Why SMA? 

It's been more than 6 years since Patrick and I learned we are spinal muscular atrophy (SMA) carriers.  Suddenly, our dreams of starting a family were unexpectedly derailed by SMA and I was feeling lost.  

At that time, there was no treatment and SMA was the number one genetic cause of death for infants.  While spinal muscular atrophy is considered a "rare disease", approximately 1 in every 50 people is a genetic carrier for SMA.  As carriers, we are healthy, but have a 1:4 chance of having a child with SMA.  After a few years and a lot of heartbreak, we finally got Francie, who is the lucky 1:4 who doesn't carry either copy of our SMA carrier genes. 

Why Cure SMA? 

When I was desperate for information, I stumbled upon Cure SMA and quickly found them to be the clearest source of truth about this disease. From them, we learned so much about genetics and how it could impact our family

I am inspired by Cure SMA's programs. They provide vital support for families living with SMA, improving their quality of life.  Additionally, they are leading the way to fund research and find a future cure for spinal muscular atrophy. Beginning with  the approval of Spinraza in 2016, we've entered a more hopeful chapter.  Advancing genetic therapies are slowing the impact of SMA and saving lives.  

You make this possible. Generous donations from people like you provide the funding necessary to make this astounding progress. Finally, a cure doesn't feel out of reach.

Why the Falmouth Road Race? 

Each year, thousands gather along the 7 mile course to cheer on runners. It's an amazing opportunity to raise awareness and funds for nonprofits.

As soon as I discovered the wonderful support of the Cure SMA community, I wanted to give back.  In 2014, I reached out to their leadership to see if I could form a local team in their honor.   That first year's team was small (and made almost entirely out of my friends & family), but each year, we've continue to grow and spread awareness for spinal muscular atrophy. Through our Falmouth Road Race partnership we've raised over $200K for Cure SMA.  Each year, thanks to you, our impact grows.

Thank you  for your gift to support our efforts and fund vital research and family support programs for those affected by SMA. If you want to know more, please reach out. 

xo,

Lin Mahoney Lavalle