47 comments

    • Robert Lee says:

      I am 70 year old male with OPMD which is progressively getting worse. It is getting more and more difficult for me to walk. My legs don’t want to work any longer. Also, my eye lids are dropping and my swallowing is compromised. I’m losing strength in my arms as well. My speech is affected. I am desperate to find help. I am ready and willing to participate in a trial please!!

  1. Monica Tirado Lloret says:

    I am living in Holland, I am 42 years OLS and I am affected of OPMD (first stage). OPMD runs in my family for several generations and more than half of the descendants are diagnosed for it.
    Therefore, if I can help to speed up for a possible solutution on OPMD, I would-be ve very glad to join the clinical trials.

  2. Monica Tirado Lloret says:

    I am living in Holland, I am 42 years old and I am affected of OPMD (first stage). OPMD runs in my family for several generations and more than half of the descendants are diagnosed for it.
    Therefore, if I can help to speed up for a possible solution on OPMD, I would be ve very glad to join the clinical trials.

  3. Dear Sir,

    We are very grateful for your hard work and dedication.
    Me and my family (my young sister,my aunt) are interest to be patients clinical trial.

    Thank you.May God bless all of your team work to achieve much more success and best wishes to be cure for all patients.Amin.

  4. K K Raghu says:

    We are living in India, my son is 22 years old and affected of Muscular Dystrophy(BMD).
    Therefore, if I can help to speed up for a possible solution on MD, I would be ve very glad to join the clinical trials.

    • Andrew Aitken says:

      Hi Monica l also suffer from opmd runs in family looking for clinical trials while still in good health .

  5. Ruth says:

    Yes I would like to try the trial I have been diagnosed with FSHD and have been taking ambuteral tablets x3 per day for a couple of years now

  6. Joe Larkin says:

    I would love to be involved in clinical trials. I am a 62 year old male and live in Kentucky. Just diagnosed with OPMD. Thank you!

  7. trudy groff says:

    Looking for a trial for trama induced MD. in the DFW area of TX. Not able to supply insurance
    and my condition is getting worse.

  8. Ann Demarais says:

    I am interested in being part of the clinical trial! I was referred to you by Dr. Michio Hirano in NYC; he is interested in being a clinical center for the trial.
    Ann Demarais

    212-925-5210
    Thanks!
    Ann

  9. Karen Blevins says:

    I have been diagnosed with OPMD. It is very prevalent in my fathers family. I have had a myotomy and just recently had to have surgery to repair the ptosis of my eye lids. I am desperately seeking treatment and would be so grateful to be a part of the clinical trial.

  10. ELIZABETH CONNNOLLY says:

    my name is Elizabeth I am effected with Myotonic Dystrophy
    never knew until my baby brother was born with the neonatal for of myotonic dystrophy1 my onset began setting in in my late 30
    I am 49 .
    I hope to be in a trial study for Myotonic Dystrophy1 soon

  11. David Hall says:

    If you are still conducting clinical trials for this, I live in Miami Beach and I have Myotonic Dystrophy. I am a 39 year old male. Thank you

  12. Mary T DiTrolio says:

    Are you still looking for patients to participate in these trials? My son is 7 yrs old and suffering from DMD.

  13. Jack Bailey says:

    sign me up please , OPMD was passed on from my father it will nice to stop my sons from getting this miserable disease..

  14. Jessica Noronha says:

    Hi there,

    I am a very concerned sister. My brother has BMD and currently has heart failure. He’s seeing cardiologists buy the medication prescribed is giving him significant side affects. Would be interested in clinical trial. I’m in Canada, would like to reach out to anyone with bmd

  15. Susan McCormack says:

    My son has DMD. He is going to be 30 this March and is really wanting to be a part of clinical trials. We are hearing more and more promising results with reguard to CRISPR and, Serapta gene therapy as well. If there is any chance of him being a candidate please contact us!

  16. ALEXANDR says:

    my son is 7 years old, Duchenne myodystrophy, deletions 5 to 31 exons. Can we get into the research , or can we get more information?

  17. Tim Guglomo says:

    I am a 68 year old male with OPMD passed down through my French fraternal grandmother’s family. My older brother is also affected. Having watched the progression of this affliction in my grandmother, father, aunt and brother I am interested in your clinical trials as a path to helping new generations that become afflicted.

  18. Peter Candia says:

    I am 20 (male), and I suffer from LGMD 2A. I am extremely interested in partaking in clinical trials as they seem to be the only promise as I age. I hope to be able to partake before my mobility worsens.

  19. Renee says:

    Genetically tested positive for OPMD. Willing to participate in clinical trial Presently live in So CA. Please contact me if you are looking for candidates. Thank you

  20. Е. Каменова says:

    My son is 5 years old with DMD and we would like to participate in clinical trial. Please contact me if you are searching for candidates.

  21. Oscar leandin says:

    Hi i am a 18year old male currently living in Sweden. I’ve been diagnosed with Limb girdle muscle dystrophy 2a (test made by cutting out a muscle sample). At first when i got my diagnose(+-2015) it was simple beacuse I still had the mobility to walk, being able to stand up from both a sitting and laying position. And i had enough amount of power and strength to do almost anything I wanted to. And right now my mobilty have gotten worse I can still walk, i can stand up witb difficulty from a sitting position but I can’t get up from a laying position. Because of the slow progressing weakness and the anxiety over the fact that i can’t function like a normal individual and do whatever I want and accomplish some of my dreams.I still remember when i found your webpage and started to follow it’s newsletter and a little spark of hope lightened up inside of me when I started reading about trying to possible treatments for LGMD2a. And i am extremely interested in maybe being able to participate in clinical trials. I just want to be able to live as happy and healthy as possible. Kind regards Oscar

  22. Gábor Madarász says:

    I’m live in Hungary (male 46 years old), my father (74 years old) and my sister (48 years old) we all have FSHD, and like to help to find a cure!

  23. Peter Fleischhacker says:

    I was diagnosed with LGMD1A long ago and am willing to participate in your trials.
    80 year old male, otherwise in good health.

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