Cure SMA Walk N Roll 2016
Aug
21
9:30 am09:30

Cure SMA Walk N Roll 2016

  • Cure SMA Walk N Roll

Welcome to Team Live RhysStrong!

Cure SMA is the number one family support organization for those affected wtih Spinal Muscular Atrophy (SMA). They have been supportive since our son Rhys was diagnosed and are still very supportive today, 3 years after we lost hm to the disease. 

SMA is the number one genetic cause of death for infants, and approximately 1 in every 50 individuals is a genetic carrier for SMA. But there’s great reason for hope. We know what causes SMA and what we need to do to develop effective treatments.

Cure SMA has invested $57 million in research. We’re getting closer and closer to an FDA-approved therapy, with 17 ongoing drug programs—and six of those are now in clinical trials. That's a big deal!! 

They also provide vital support for families living with SMA, improving their quality of life today. And every year they host the largest SMA conference in the world, bringing families together with the leading SMA researchers. 

Joining our team is easy! Just click on this link and follow the steps!

Thank you again for your personal gift to support our efforts to fund vital research and family support programs for those affected by SMA, especially our very own Rhys!

Gratefully,

Monessa & Blaise

SMA Candle Lighting
Aug
8
8:00 pm20:00

SMA Candle Lighting

Every year around the world millions of people light candles to honor those who have lost their battle to SMA and those that continue to fight every. single. day. We hope you join us and light a candle from wherever you are at sun down. Feel free to post your pictures to our Facebook page and use the hashtags #liverhysstrong and #smaawareness. Or, you can email your photos to info@liverhysstrong.org to be included on our website and pages. 

Our candles will be lit in memory of Rhys. Help light up this world while spreading awareness of SMA. 

Portland Sea Dogs SMA Day
Aug
2
11:30 am11:30

Portland Sea Dogs SMA Day

  • Portland, ME

Join us at the Portland Sea Dogs SMA Day on August 2nd. We will have t-shirts for sale. Additional information and tickets can be found here. Gates open at 11:30 am. Game starts at 1 pm.