I am a biophysicist at UB working on mechanical stresses and transduction in cells. We have discovered a naturally occurring peptide that has promise as a therapy for MD. We started a biotech company called Tonus Therapeutics (http://tonustherapeutics.com, previously Rose Phamaceuticals) to develop the therapy.
About my family:
Five children, two adopted, one deceased
Name(s) of child(ren)/individual(s) with Duchenne:
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Thank you just had to ask the question since everything so far in my experience has been mutation geared. I think I read the article wrong. If I said that Jeffrey was your grandson then I was wrong, sorry for that. What can we do as parents to help find the funding?
Thank you so much for the article and for the information. I hope you receive the money you need & if this shows promise for these boys I will pray that we get it out there ASAPfor them. We also need to find a standard of care for this disease no two clinics are created equal & that needs to change. It's sad that I have to go out of network or to another state to find the best care for him & it's sad that people who can't afford to do what I do for my son and have to settle on care & not even realize that there is more that can be done. Sorry for being so mad it's not directed at you, just the situation. Thank you for your work and God Bless you & your family & especially your grandson, Suzanne
I'm not against you, I am on board for anything that might have the potential to keep my son out of a wheelchair or get him out of it & keep him walking any independent. I just feel that if we are to raise awareness about Duchenne & Becker muscular dystrophies we need & must state the facts about the disease correctly. I share your pain about your grandson, because of my own son who by the way has a form of Autism as well as DMD. I want to take his pain away & at times feel so helpless. Fortunately at age 12 he is still able to walk, but has slowed down considerabley & so a wheelchair is just around the corner.
I saw the article in the Buffalo News Sunday 11/7/10. "Finding hope in a spider's bite". My son has a splice site mutation. What mutation/mutations of DMD would this treatment be beneficial for? I have some complaints with the article The paragraph that says " by age 10, affected children, almost always boys, usually need braces to walk" My son Francis has never ever used leg braces to walk. He uses night splints only at night to prevent his heal cords from becoming shortened. Also, steroids do not strengthn muscles, steroids slow down progression of DMD.
I have been on a machine that was created by Dr Rhoads in Corpus Cristi Texas. It helps the cells heal. I go on it twice a day for 40 minutes. I just thought that i would give you some information as what i am doing.