"i very much agree with u ofelia. so frustrating. Yes we all are aware of the safety issues involved but unfortunately with this illness our boys do not have the luxury of "the waiting game".We are all raising money for the same…"
stephen beggs's Groups
stephen beggs's Page
Latest Activity
stephen beggs favorited Richard Darienzo's discussion Why isn't Duchenne being given same consideration as AIDS?stephen beggs replied to BeritSofie's discussion ATALUREN - confused about the information given from PTC Therapeutics and Genzymestephen beggs joined MicahsDaddy's group
Medication/Supplement Journals
A place to keep a journal of what medication(s)/supplement(s) you are giving to your child.See More
stephen beggs commented on Pat Furlong's blog post The 2012 West Coast Connect Meeting"well said pat, speaks volumes. Extremely well articulated to how we all feel. Looking forward to catching up with the presentations from the recent west coast connect meeting."
stephen beggs joined Nimi Langer's group
Patient Specific Exon Skipping -NOW!
Pushing forward a venture that will concentrate on that. See More
stephen beggs joined Danielle's group
Families from the U.K (United Kingdom)
A group for families from the U.K to chat about their families.
stephen beggs commented on PPMD's group Deletions"thanx keith, appreciate it, just a waiting game now, but am hopeful now that something pretty soon down the line will be there for us with one approach or another, brilliant site by the way, really helpful and supportive."
stephen beggs commented on PPMD's group Deletions"hi folks, just checking if any other families have deletion 46-49 , think it is fairly common and amenable to exon 45 skipping currently in trial with both GSK/Prosensa and AVIBiopharma. would appreciate any feedback. Also for advice on giving…"
Sharon Hesterlee left a comment for stephen beggs"Welcome Stephen! Please let me know if you ever have any questions about DMD research or strategy or anything else!
Sharon"
StaffPPMD left a comment for stephen beggs
"Welcome Stephen- 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,…"
Profile Information
- About me:
- live in northern Ireland. community nurse. married with a lovely baby boy Aaron.
- About my family:
- married. one beautiful baby boy now 6 months. loving uncle to a lovely 6yr old boy with duchenne.
- Name(s) of child(ren)/individual(s) with Duchenne:
- ben
- Age(s) of child(ren)/individual(s) with Duchenne:
- 4-6
- City:
- northern ireland
Comment Wall (2 comments)
- At 8:11am on April 12, 2012,
Sharon Hesterlee said… Welcome Stephen! Please let me know if you ever have any questions about DMD research or strategy or anything else!
Sharon
- At 10:27am on March 26, 2012,
StaffPPMD said… Welcome Stephen- 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.
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