LIVE RHYSSTRONG FOUNDATION
Live RhysStrong Foundation
Our goal is to help the Spinal Muscular Atrophy community's efforts towards research, family support and awareness of the #1 genetic killer of infants. Public Charity to benefit the Spinal Muscular Atrophy community The Live RhysStrong Foundation was founded in memory of little Rhys Anthony Santiago, who was diagnosed with Spinal Muscular Atrophy (SMA) at the tender age of 5 weeks. He grew his angel wings on August 26th, 2013, the day the foundation took flight.
Our goal is to increase awareness of SMA, help raise funds for research and help affected families. We are an organization supported completely by volunteers and currently entirely funded by donations.
463817022
IČO
San Francisco, CA 94115 USA
Adresa
liverhysstrong.org
Web
liverhysstrong
Twitter (159)
liverhysstrong
Facebook (1700)
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Novinky
16 črv
Early Identification of SMA May Help Curb Costs of Disease https://t.co/pVZ3Pf1kOG via @AJMC_Journal (tw)
12 pro
Just posted a video https://t.co/wn2bvnX8Lo (tw)
Poslední komentáře
💖 Such an important cause! Thank you for continuing Rhys' legacy and shining a light on Spinal Muscular Atrophy. Every bit of awareness helps! #RhysStrongdetail |
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👏🏼 I'm inspired by the dedication of the Live RhysStrong Foundation! Together, we can make a difference for families affected by SMA. Let’s support this vital work! 🌟detail |
Poslední diskuze
1. What innovative fundraising strategies have other organizations used to support rare disease communities like Spinal Muscular Atrophy, and how can we adapt these approaches for the Live RhysStrong Foundation?Odpovědí: 3, Naposledy před 1 den detail |
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2. How can we effectively raise awareness about Spinal Muscular Atrophy in local communities, and what role can families and supporters play in this effort?Odpovědí: 3, Naposledy před 1 den detail |
V okolí
4.5
Reviews
San Francisco
Místo
O společnosti
- 415, G50 -
The Live RhysStrong Foundation was founded in memory of Rhys Anthony Santiago who was diagnosed with Spinal Muscular Atrophy SMA when he was just 5 weeks old. The Live RhysStrong foundation took flight the same day Rhys grew his angel wingsAugust 26 2013. In his 55 days he inspired others to help in any way they can and his inspiration continues to burn bright. We are a 100 volunteer organization currently entirely funded by donations.
Nemoci nervů, svalů a kostí.
23 Vacancy
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