I have no direct involvement with MD but rather with another mitochondrial condition, LHON. Although a very different condition there are some treatment similarities and I believe it is important for rare disease patients to co-operate where possible.
About my family:
Son aged 24 with LHON (legally blind)
Name(s) of child(ren)/individual(s) with Duchenne:
Russell Wheeler
City:
Winchester
Comment Wall (1 comment)
You need to be a member of PPMD Community to add comments!
Welcome Russell- We hope using the community site to connect with families all over the world to share stories, news, and information about Duchenne is empowering for you and your family.
Please don't hesitate to contact us by phone, email, or message if you ever need anything -- 800-714-5437 - community@parentprojectmd.org
And if you haven't already, we hope you consider registering on PPMD's main website. Registering allows us to send you information tailored to parents & families of boys with Duchenne, e-newsletters, additional web-based research reports, and other information specifically targeted for members of the community.
Comment Wall (1 comment)
You need to be a member of PPMD Community to add comments!
Join PPMD Community
StaffPPMD said…
Welcome Russell- We hope using the community site to connect with families all over the world to share stories, news, and information about Duchenne is empowering for you and your family.
Please don't hesitate to contact us by phone, email, or message if you ever need anything -- 800-714-5437 - community@parentprojectmd.org
And if you haven't already, we hope you consider registering on PPMD's main website. Registering allows us to send you information tailored to parents & families of boys with Duchenne, e-newsletters, additional web-based research reports, and other information specifically targeted for members of the community.