2017 Cure SMA Walk N Roll
Aug
20
10:00am10:00am

2017 Cure SMA Walk N Roll

Register or donate to Team Live RhysStrong!

Donations benefit Cure SMA, a national non-profit organization.

SMA is the number one genetic cause of death for infants, and approximately 1 in every 50 individuals is a genetic carrier for SMA. Our son, Rhys, was diagnosed with the most severe type, Type 1, in August 2013. He was with us for 55 beautiful days.

Now there is great reason for hope. We have the first-ever approved treatment that targets the underlying genetics of SMA.  Our work is not done. We know what we need to do to develop and deliver effective therapies. And we’re on the verge of further breakthroughs that will continue to change the course of SMA for everyone affected—from infants to adults—and eventually lead to a cure.

We’ve chosen to partner with Cure SMA because of the breadth and depth of their relationships in the world of SMA. Cure SMA is a national non-profit organization that is very involved in working with pharmaceutical companies to develop new treatments for Spinal Muscular Atrophy and help bring them through FDA approval. They’ve already invested over $62 million in research and have funded over half of the ongoing drug programs.

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.

Thank you for walking every year with us for Rhys and all those with SMA !

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2017 SMA Candle Lighting
Aug
12
8:00pm 8:00pm

2017 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 #smaawarenessmonth. 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. 

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

Cure SMA Walk N Roll 2016

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

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SMA Candle Lighting
Aug
8
8:00pm 8:00pm

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. 

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