Cure Raghav - Rare disorder in GPX4 gene | Milaap

Cure Raghav - Rare disorder in GPX4 gene

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. We don’t really know what his future looks like.

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

But there is hope - Research
We are partnering with Dr. Russell Saneto, a Professor of Neurology at the 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.

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

Donate Now
We are raising money to fund Dr. Saneto’s research to find a cure for Raghav. 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, I 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 life the way you and I do.

Be generous.

Be kind.

Be the miracle Raghav needs.

THANK YOU ❤️


Contact
Sanath (Raghav's Dad) - sanath@gpx4.org
Ramya (Raghav's Mom) - ramya@gpx4.org
Ask for an update
14th October 2019
Dear Supporters,

Thank you for the wonderful support so far. We hear that they have been able to find some cure for Raghav. To help raise the rest of the amount for the treatment faster,  Milaap is offering a 15% matching on all the payments (till the funds last).

This means for every 1000 INR, Milaap will contribute an additional 150 INR to the campaign thereby creating 1.5X the impact.  This is available only till 15th October midnight.

Please come forward to help Raghav undergo treatment faster!

You can help via the following methods:
1. Clicking on the donate now button: https://milaap.org/fundraisers/support-raghav-5
2. Donating via UPI (Tez/Bhim/PhonePe etc): givetomlpsanath@yesbankltd

Regards,
Team Milaap
Dear Supporters,

Thank you for the wonderful support so far. We hear that they have been able to find some cure for Raghav. To help raise the rest of the amount for the treatment faster,  Milaap is offering a 15% matching on all the payments (till the funds last).

This means for every 1000 INR, Milaap will contribute an additional 150 INR to the campaign thereby creating 1.5X the impact.  This is available only till 15th October midnight.

Please come forward to help Raghav undergo treatment faster!

You can help via the following methods:
1. Clicking on the donate now button: https://milaap.org/fundraisers/support-raghav-5
2. Donating via UPI (Tez/Bhim/PhonePe etc): givetomlpsanath@yesbankltd

Regards,
Team Milaap
4th October 2019
Thank you everyone for your donations! We finally have a plan to finding a cure for Raghav. First phase will be to get a temporary relief to Raghav by finding an existing FDA approved medicine that can work. We are in the initial stages of getting this started. We shall be withdrawing funds for the same. 
Thank you everyone for your donations! We finally have a plan to finding a cure for Raghav. First phase will be to get a temporary relief to Raghav by finding an existing FDA approved medicine that can work. We are in the initial stages of getting this started. We shall be withdrawing funds for the same. 
13th September 2019
Raghav says “Yes! I have my first success story. Thank you for making it happen!”

Last 48 hours was crazy (in an AMAZING way) - The fundraiser reached $100,000. Even before I realized what it means to share my story with the world, several of you stepped in - Donated to the fundraiser, shared my post and offered to make connections. You all chose to fight alongside with me instead of saying sorry.

You must be thinking - Wow, may be we should have gone for a bigger number? Some people even messaged me asking to increase my fundraising goal.

NO, I am not going to do that. I want this effort to be Raghav’s first success story! :-) I have a screenshot of the page to show Raghav when he grows up. I want to take a moment to see what kindness can do.

$100,000 will get us to researchers, but is not enough to fund drug discovery and research unknowns along the way. I want this effort to be sustained and ongoing until we find a cure for Raghav.

Too abstract for a goal? Here is a relatable one - until Raghav can run around like other kids and be able to hold a favorite toy in his hand. You can DONATE here to support the research for Raghav’s cure. Please share it in your network even if you have already done that.

I have also set up a dedicated facebook page https://www.facebook.com/cureforRaghav/ This is not a page for heart melting struggle pictures. This is a page to share his little wins, research progress and smiling face. Please like the page if you want to be a part of his success stories. I promise this won’t be anything short of inspiring content.
Thank you
Raghav says “Yes! I have my first success story. Thank you for making it happen!”

Last 48 hours was crazy (in an AMAZING way) - The fundraiser reached $100,000. Even before I realized what it means to share my story with the world, several of you stepped in - Donated to the fundraiser, shared my post and offered to make connections. You all chose to fight alongside with me instead of saying sorry.

You must be thinking - Wow, may be we should have gone for a bigger number? Some people even messaged me asking to increase my fundraising goal.

NO, I am not going to do that. I want this effort to be Raghav’s first success story! :-) I have a screenshot of the page to show Raghav when he grows up. I want to take a moment to see what kindness can do.

$100,000 will get us to researchers, but is not enough to fund drug discovery and research unknowns along the way. I want this effort to be sustained and ongoing until we find a cure for Raghav.

Too abstract for a goal? Here is a relatable one - until Raghav can run around like other kids and be able to hold a favorite toy in his hand. You can DONATE here to support the research for Raghav’s cure. Please share it in your network even if you have already done that.

I have also set up a dedicated facebook page https://www.facebook.com/cureforRaghav/ This is not a page for heart melting struggle pictures. This is a page to share his little wins, research progress and smiling face. Please like the page if you want to be a part of his success stories. I promise this won’t be anything short of inspiring content.
Thank you
Content Disclaimer: The facts and opinions, expressed in this fundraiser page are those of the campaign organiser or users, and not Milaap.
Rs.1,148,364 raised

Goal: Rs.3,500,000

Beneficiary: Raghav info_outline

Supporters (750)

NM
N donated Rs.500

Your Son will recover soon.

A
Anonymous donated Rs.1,000
SK
SENTHIL KUMAR M donated Rs.2,500
MM
MEENAKSHI MURALI donated Rs.500
MI
Milaap Impact Partner donated $2.16

Matching payment towards Anonymous’ contribution

A
Anonymous donated Rs.1,000