A Father’s Plea

 

Tax-deductible donations at #Hope4KB Research Fund

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3 thoughts on “A Father’s Plea”

  1. Thanks for telling your story. It comforting to know that others have similar situations. My 10 year old daughter has a rare form of mitochondrial disease (MT-ATP6 mutation). Do you think that EPI-743 is making a noticeable difference? It seems that you are doing a wonderful job advocating for your daughter. Would you recommend any treatments that have been beneficial? I wish your family all the best.

    1. Thank you for contacting us, Brian. EPI-743 has helped some and the Mito cocktail has helped. We are currently funding research at the Children’s Hospital of Philadelphia to study zebrafish to gain an understanding of the natural history of her mutations. They will also test FDA approved drugs on the zebrafish to see if any help. Please feel free to reach out to us at anytime. You may email us at nubpl.org@gmail.com. Our best to you and your family.

    2. Thank you for contacting us, Brian. EPI-743 has helped some and the Mito cocktail has helped. We are currently funding research at the Children’s Hospital of Philadelphia to study zebrafish to gain an understanding of the natural history of her mutations. They will also test FDA approved drugs on the zebrafish to see if any help. Please feel free to reach out to us at anytime. You may email us at nubpl.org@gmail.com. Our best to you and your family.

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