Sanath Ramesh

@sanathkr_

Father of baby Raghav. Finding a cure for GPX4 gene disorder 🧬 using NEVER GIVE UP 💪 Work for . 💻🌥️

Seattle, WA
curegpx4.org
Vrijeme pridruživanja: listopad 2009.
174 fotografije ili videozapisa Fotografije i videozapisi

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  1. 3. velj

    is *critical* for rare diseases kids don't have until 2025 to wait to stop this nonsense. We need this NOW 📅

    2015: Immediate open access is critical for Ebola. 2016: For Zika 2019: For opioids 2020: for ... 2025: Let's stop this nonsense. It's critical for for HIV, cancer, malaria, and literally ALL RESEARCH.
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    1 reply 7 proslijeđenih tweetova 26 korisnika označava da im se sviđa
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  2. 30. sij

    I had told you about NAC earlier, but this is bigger than we thought. It is literally acting like a "Turn On" switch for GPX4 condition. Hoping to dial up the dosage gradually.

    1 reply 1 proslijeđeni tweet 11 korisnika označava da im se sviđa
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  3. 29. sij

    Raghav lifts his head FOR FIRST TIME IN LIFE 🥇💪💥 Zero progress in 15months, 48hrs after a mild dose of N-Acetylcysteine this happens I will make you stand on your own feet real soon Raghav ❤️

    25 replies 20 proslijeđenih tweetova 268 korisnika označava da im se sviđa
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  4. 22. sij

    Three characters are nearly ruining my son's life - I.R.B IRB is a blackhole - paperwork that gets in never comes out for *months* This is the FIRST process I need to fix to make any reasonable progress

    8 korisnika označava da im se sviđa
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  5. 22. sij

    I have signed this petition. Every patient advocate MUST do to keep scientific knowledge free open for all. Sometimes this knowledge was generated in part by our hard earned foundation's money.

    Patients and scientists: THIS IS NOT A DRILL. The White House is considering requiring open access to all taxpayer-funded research. Please sign to let The White House know that you strongly support this transformational initiative:
    2 proslijeđena tweeta 10 korisnika označava da im se sviđa
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  6. 21. sij

    Life is indeed a constant struggle 💪 Thank you for writing this wonderful article in highlighting Raghav's disease and our efforts to find a treatment blending with the science of GPX4

    1 reply 3 proslijeđena tweeta 9 korisnika označava da im se sviđa
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  7. 19. sij

    Now I am more determined and poised to find a cure for this disease. We cannot let this happen to anyone. Science, regulations, people, money, everything exists. We need to find a treatment this year. WE WILL. I WILL. For my dear Avian ❤️

    3 proslijeđena tweeta 43 korisnika označavaju da im se sviđa
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  8. 19. sij

    Saddest day of my life so far: One of the kids with GPX4 rare disease passed away 💔 Avian was just 8 months old. He was like a part of our extended family. I cannot believe how cruel this disease can be We now have just 3 kids left in the world with the disease incl my son

    17 replies 10 proslijeđenih tweetova 71 korisnik označava da mu se sviđa
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  9. proslijedio/la je Tweet
    16. sij

    Patient advocacy groups: FYI , you can get a free pass for the orphan drug conference. details below FYI

    1 proslijeđeni tweet 1 korisnik označava da mu se sviđa
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  10. 13. sij

    Much needed policy for nearly 20% of the world's population Real challenge is in the implementation and enforcement

    gets a national policy. We welcome community comments.
    1 reply 1 proslijeđeni tweet 10 korisnika označava da im se sviđa
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  11. 3. sij

    Excited to be a part of this organization!

    Announcing
    17 korisnika označava da im se sviđa
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  12. proslijedio/la je Tweet
    31. pro 2019.

    A year ago we were fundraising for ’s Series B. I failed my team and our partners. I couldn’t tell a story that excited VCs. Now that I’m firmly settled and over the moon in my new role — and I’ve had a year to reflect — here’s the deck, with lessons learned:

    96 proslijeđenih tweetova 352 korisnika označavaju da im se sviđa
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  13. 27. pro 2019.

    In a nutshell: - Identifying patient needs - Low-throughput drug repurposing - Identifying biomarkers - Natural history study - Understanding disease biology - Drug development pipeline explained here -

    NEED YOUR FEEDBACK 🗣 💊New Drug development pipeline to find a cure for GPX4 I designed this pipeline to reduce the chance a drug failing in the clinic Read first draft here: thank you for pushing me to write this!
    4 korisnika označavaju da im se sviđa
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  14. 27. pro 2019.

    🆕📢 Framework for therapy development for I have explained my framework to finding a cure for my son working-backwards from patient needs 💊 🔓OPEN to any rare disease community to copy/paste/adapt this framework

    1 reply 2 proslijeđena tweeta 6 korisnika označava da im se sviđa
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  15. 20. pro 2019.

    NEED YOUR FEEDBACK 🗣 💊New Drug development pipeline to find a cure for GPX4 I designed this pipeline to reduce the chance a drug failing in the clinic Read first draft here: thank you for pushing me to write this!

    5 proslijeđenih tweetova 22 korisnika označavaju da im se sviđa
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  16. 17. pro 2019.

    I am like a blind person climbing Everest. I cannot give the excuse: "if only I could see" I need to work WITH my limitations, constraints, faculties and resources. I cannot work AROUND them. I might fail. But so do many people without those constraints. I can at least try.

    29 korisnika označava da im se sviđa
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  17. 17. pro 2019.

    I have been depressed lately I wanted to stop trying to a cure for my son. Didn't know why, until I read book Thriving Blind Subconsciously I'd been telling myself: "It's too hard, I can't do this" What will happen if a blind person climbing Everest said that?

    31 korisnik označava da mu se sviđa
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  18. 11. pro 2019.

    This paper confirms a suspicion I had: "Preclinical experiments in cells, tissues, animal models turn out to be poorly predictive of human efficacy" This is not a rule but a caveat to keep in mind, especially for communities. How can we do better?

    Improving the odds of drug development success through human genomics
    3 korisnika označavaju da im se sviđa
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  19. proslijedio/la je Tweet
    8. pro 2019.

    Hey :This is the father of a son with and he is writing a paper to find a cure for his son because no pharma company wants to help. You covering the plight of parents may help them immensely.

    Found 2 existing drugs to try on Raghav for GPX4 💊's Tecfidera & 's Idebenone After 100s of research papers, 35 drugs, 17 mechanisms, 8 categories, ZERO experiments 📝Here is my paper explaining process & findings:
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    7 proslijeđenih tweetova 16 korisnika označava da im se sviđa
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  20. 8. pro 2019.

    BEAST MODE ON 💪 , and join Raghav's fight to find a cure for

    Many patients need help advocating to gain support for their condition. I am wearing custom cleats on to be a voice for and support patients, like 15 mo. Raghav with a rare genetic disorder , that have no treatment options.
    1 reply 9 proslijeđenih tweetova 49 korisnika označava da im se sviđa
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