Raghav has an ultra rare genetic disorder called Sedaghatian type Spondylometaphyseal Dysplasia (SSMD). He is 2 years old, but cannot sit up without support. He doesn’t have the muscle strength to hold a toy in his hand. He doesn’t have the oral strength to swallow food. He cannot hear normally. His bones are not developing as expected. Raghav’s future is described as wheelchair bound, non-verbal and prone to premature death. Despite all this Raghav manages to always smile, be it waking up from his crib or from an ICU bed. He is that resilient! Learn more about Raghav’s journey @ curegpx4.org
No treatment today, but there is hope!
As of today, there is no treatment for Raghav’s condition. We have partnered with leading researchers to work on a gene therapy drug that will fix the faulty gene and is the ultimate cure.
“Dama Dam” for Raghav
A bunch of us who are dance enthusiasts, decided to come forward to create a dance video as a fundraiser for Raghav. This is our little effort to make a difference in his life and hope that you too can join us in this effort.
Your donation can make a difference.
Research efforts cost $5-7 million. It is a big number, but we are taking one step at a time. We have raised $500,000 so far in the last year. Our immediate need is to reach the next research milestone $30,000.
$1000 - You will fund one week of research
$500 - You will support the research infrastructure
$150 - You will fund one day of research
Ways to support:
• Through this campaign
• Donate on our website: curegpx4.org/donate
• Donate in other currencies (including INR): http://m-lp.co/sanathra
Care and Share is a registered 501(c)(3) non-profit (EIN: 36-3708966). Donations are tax deductible as permitted by the IRS rules.
From Raghav's parents Ramya and Sanath:
After growing up, Raghav might become a doctor, scientist, singer, actor, or a Nobel laureate. But whatever he does, we will teach him to be kind and give back to the community that made his life a reality. You are a part of making this dream a reality. Each dollar takes Raghav one step closer to living a life the way we all do. Time is of essence.
Be generous. Be kind. Be the miracle Raghav needs.