2018 Cure SMA Walk N Roll
Aug
25
10:00 AM10:00

2018 Cure SMA Walk N Roll

register or donate to team Live RhysStrong!

We are excited to announce a new location for this year’s 16th Annual Northern California Chapter Walk-n-Roll! Join our team today and start fundraising for this fun filled day to help fund a treatment and cure for spinal muscular atrophy. Come celebrate and walk with us!

Join us for a walk on a scenic, accessible pathway at our new location, Kennedy Grove Regional Recreation Area in El Sobrante. You’ll enjoy a balloon artist, face painter, lunch, an awesome raffle, and more!

Event Information

Saturday, August 25, 2018
Kennedy Grove Regional Recreation Area
6531 San Pablo Dam Rd
El Sobrante, CA 94803

Event Schedule

10:00 am:  Registration, Refreshments & Entertainment begin
10:30 am:  Warm-up Exercises & Opening Ceremony
11:00 am:  Walk begins
12:00 pm:  Lunch
12:30 pm:  Drawing

View Event →
Diagnosis Day
Aug
14
12:00 AM00:00

Diagnosis Day

Here at LRS, we first learned about Spinal Muscular Atrophy in August 2013. After almost 2 weeks of intubation, an MRI and countless needle pricks, an SMA diagnosis for Rhys was confirmed on August 14, 2013 when his blood work came back positive for the disease. Most people have no knowledge of the disease - our family was one of them.

So that others are not blindsided, help spread awareness by downloading our SMA info card or our postcard and passing it out to 3 people you know or meet!

View Event →
2018 SMA Candle Lighting
Aug
11
7:30 PM19:30

2018 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 or tag us at our Instagram profile (@liverhysstrong) 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. 

View Event →
2017 Cure SMA Walk N Roll
Aug
20
10:00 AM10:00

2017 Cure SMA Walk N Roll

  • Peacock Meadow in Golden Gate Park (map)
  • Google Calendar ICS

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 !

View Event →
2017 SMA Candle Lighting
Aug
12
8:00 PM20:00

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. 

View Event →
Cure SMA Walk N Roll 2016
Aug
21
9:30 AM09:30

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

View Event →
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. 

View Event →