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Cure Raghav



20th October 2019 - Rhythms music is organizing a music show in support of raising funds for Raghav. If you are in Seattle, and enjoy music, we invite you to the show. Tickets are available at https://www.eventbrite.com/e/shakthi-tamil-musical-fundraiser-by-rhythms-studio-tickets-75238838391.

Raghav has a rare change in DNA - a change in GPX4 gene that has a 1 in 75 million chance of occurring. He is 1 year 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. His parents don't really know what his future looks like.

No Treatment Today
As of today, there is no treatment for Raghav. Only option is to wait until his symptoms get severe, give him some pain killers, and comfort him.

But there is hope - Research

 

  

 

His parents are partnering with Dr. Russell Saneto , a Professor of Neurology at University of Washington and an expert on Mitochondrial Diseases. His team is going to recreate Raghav’s mutation on a mouse and examine the effects. This is the first step towards understanding more about this disease, identifying potential drug candidates, partner with pharmaceutical companies to test them on mouse, submit a proposal to FDA, conduct clinical trials and eventually administer the drug to Raghav.

Here is a quick run down of the steps involved in finding a cure:

Phase 1: Create a mouse model (oh, btw find researchers before that)
Phase 2: Conduct research studies on the mouse with candidate drugs
Phase 3: Go through FDA process for approval
Phase 4: Check if the medicine works for Raghav (..and we could end up in Phase 2 all over again at this point if it fails)

This could take several years, millions of dollars, and hundreds of people working on it. We don’t know if we will succeed. But we want to take the first step and cross the remaining bridges when we get to it.

Donate Now
Time is of essence. The earlier we treat Raghav the lesser damage to his body.

After growing up, Raghav might become a doctor, scientist, singer, actor, or a Nobel laureate. But whatever he does, his parents 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.

Be generous.

Be kind.

 
 

For corporate donations: Most of the companies will have a dedicated internal site for charity donations. Care & Share is registered with most of the employee giving programs and should be able to find with EIN 36-3708966. If the company uses Benevity then this project can be seen with the title "Support Raghav's Cure - Rare disorder in GPX4 gene". For the companies using services other than Benevity, please specify "Raghav Cure" in the comment/purpose field. Please do not forget to request the match.

 

For more information, please contact:

Sanath Kumar (Raghav's dad) - 858 531 5682

Ramya (Raghav's mom) - 858 230 5747

Ashley Elenjickal - 425 273 6021  elenjickal@hotmail.com

Santhosh Nair - 425 770 2595   sanpnair@hotmail.com

 


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