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Julie's Website
August 2008 Bethlem Myopathy/Ullrich CMD conference notes

New! PT 2011
August 2008 Bethlem Myopathy/Ullrich CMD conference notes
October 2005 Bethlem Myopathy/Ullrich MD conference notes
Update 2006
Update 2005
Update 2004
Julie's Hypotonia Story
The Medical Puzzle
The Muscle Biopsy
The Diagnosis
Physical Therapy--updated in 2008!
Seating at school
Julie's Wheels
The Sleep Studies
Julie's flexible Daddy
Bethlem Myopathy--DNA and Muscles
Julie's Bethlem Myopathy Book

Notes and Handouts

This year was the 5th annual Bethlem Myopathy/Ullrich Congenital Muscular Dystrophy family conference at CHOP, put on by Dr. Carsten Bonnemann and his crew.  Click the links below to download my conference notes (such as they are!) as well as .pdf files of the conference handouts that my husband scanned.
If you are having trouble accessing these files, email me at and I will be glad to send them to you directly!

Meredith's conference notes

BM/UCMD Conference Handout (pdf)

OT Handout from conference (pdf)

The whole motley crew from the BM/UCMD conference!

Julie is in her wheelchair to the left of the lad with red shorts and a hockey stick.  I'm standing behind her in black and white with my arm around Robin in white and green.  Dr. Bonnemann is behind me, picking up a little fellow so he can be in the picture, too!