Cure Raghav - Rare disorder in GPX4 gene | Milaap
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Cure Raghav - Rare disorder in GPX4 gene

Raghav is my sweet 2 year old son.

My biggest dream for Raghav is what most people consider to be mundane - for him to go to school, play in the park and eat ice cream like most kids do. Raghav cannot do any of this if we don’t find a treatment for his underlying genetic disease.

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. His family really doesn’t know what his future looks like.

Raghav’s quality of life is not what one would want for any 2 year old. He went through 4 unplanned surgeries just in the last year. He goes through therapy to work on even basic skills such as swallowing his saliva. His future is described as wheelchair bound, non-verbal and prone to premature death.
Despite all this Raghav manages to give a 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. Finding a new drug can take years, and we don’t think Raghav has the time for it. We have partnered with leading researchers to come up with practical short and long term strategies to find a treatment for his genetic disorder.

Short term: Drug Repurposing

We are working with researchers to comb through hundreds of approved medicines to test if any of those can be repurposed to treat Raghav’s condition. This research study costs $200,000 and is a very promising path to bring improvements to Raghav’s quality of life. Testing each drug costs $1500. By donating that amount you will open up the possibility of getting one drug to improve Raghav’s quality of life.

Long term: Gene therapy
Gene therapy will replace Raghav’s faulty gene with a good one. This is expected to fix the problem at the root cause. It costs $5-7 million and can take 4 years to get FDA approval. We are currently in the stage of developing a proof of concept for the gene therapy drug and testing its effectiveness on disease models.

Donate Now
Time is of essence. Raghav does not have a lot of time to wait and hope for a miracle to come along.

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
https://www.curegpx4.org/

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Cost estimates for treatment
Cost estimates for treatment
Research Conference to find a cure for Raghav
Research Conference to find a cure for Raghav
Research Roadmap to cure Raghav
Research Roadmap to cure Raghav
Research Team
Research Team

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Ask for an update
9th December 2020
Dear Supporters,

Thank you for your love. We currently have a team of researchers working on a gene therapy treatment for Raghav.

Short term: Drug Repurposing
We are working with researchers to comb through hundreds of approved medicines to test if any of those can be repurposed to treat Raghav’s condition. This research study costs $200,000 and is a very promising path to bring improvements to Raghav’s quality of life. Testing each drug costs $1500. By donating that amount you will open up the possibility of getting one drug to improve Raghav’s quality of life.

Long term: Gene therapy
Gene therapy will replace Raghav’s faulty gene with a good one. This is expected to fix the problem at the root cause. It costs $5-7 million and can take 4 years to get FDA approval. We are currently in the stage of developing a proof of concept for the gene therapy drug and testing its effectiveness on disease models.

Please continue to show your support. This would mean a lot to us.
Dear Supporters,

Thank you for your love. We currently have a team of researchers working on a gene therapy treatment for Raghav.

Short term: Drug Repurposing
We are working with researchers to comb through hundreds of approved medicines to test if any of those can be repurposed to treat Raghav’s condition. This research study costs $200,000 and is a very promising path to bring improvements to Raghav’s quality of life. Testing each drug costs $1500. By donating that amount you will open up the possibility of getting one drug to improve Raghav’s quality of life.

Long term: Gene therapy
Gene therapy will replace Raghav’s faulty gene with a good one. This is expected to fix the problem at the root cause. It costs $5-7 million and can take 4 years to get FDA approval. We are currently in the stage of developing a proof of concept for the gene therapy drug and testing its effectiveness on disease models.

Please continue to show your support. This would mean a lot to us.
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. 
Rs.1,860,541 raised

Goal: Rs.3,500,000

Beneficiary: Raghav info_outline

Supporters (963)

A
Anonymous donated $100
VP
Venkatesan donated Rs.1,000
IK
Ishaan donated Rs.250

May God bless you!

A
Anonymous donated Rs.500
ss
shipra donated Rs.1,000

Stay strong. May almighty bless you.

A
Anonymous donated £25

Raghav baby, you will be in my prayers from today. You are definitely going to be cured. Be brave my dear.