We welcome your interest in fighting Spinal Muscular Atrophy (SMA), and your dedication to raising awareness and support to find treatments and a cure for this devastating disease.

The SMA Coalition is a voluntary alliance of nonprofit SMA organizations from across the country concerned with accelerating SMA research.  We have united in order to coordinate our efforts towards increased U.S. government financial support for SMA research.

One of our initiatives is to build a ‘Helping Hands’ network comprised of people like you who want to actively assist in our efforts.  This network will consist of a ‘Helping Hand’ or contact in each and every state who will be willing to assist with our mission.  Presently, we are working to identify the families and friends who will serve as our ‘Helping Hands’ volunteers.

We invite you to lend a ‘Helping Hand’ and volunteer for SMA. You are probably wondering what being a ‘Helping Hand’ involves: it’s simple and will take very little of your time! 

Here are the details:

First, our ‘Helping Hands’ will receive regular email updates about our efforts in Washington to advance SMA research. All you need to do is read the updates and stay informed on the progress we’re making.

Second, you will receive a “Call to Action” no more than 3 or 4 times a year that will ask you to send an email to the Members of Congress and U.S. Senators from your state.   We will provide their email address and the text of the email message, so all you have to do is click and send!

Finally, if you are able and willing to travel to Washington, DC, we would welcome your participation one day each year, in the early spring, for our annual visit to Capitol Hill.  The Hill visit is not mandatory, but we encourage families and friends from across the country to come to Washington where we would arrange for you to visit with your Members of Congress and Senators.  If you unable to travel but still willing to meet with your Representatives, we can also assist you in arranging a visit to their offices back home in your state.

All we need from you is your name, address, home and work telephone numbers, and e-mail address!

Together, our ‘Helping Hands’ will ensure that every Member of Congress, every U.S. Senator, and all key leaders at the National Institutes of Health are well-informed, actively engaged and supportive of the research that will lead to effective treatments and a cure for SMA — and soon!

We look forward to hearing from you and thank you again for your interest and support,
The SMA Coalition

For more information, contact Laura Breiteneicher