I was wondering if it impossible for men to marry with FSHD. I know women like big muscles and I think they probably want someone to carry them over the...
Alex was born prematurely (14 weeks early weighing 1# 14 oz and was 14 inches long.) He was a spunky kid from get go and pulled out the ventilator when he was...
Joanne, Thanks for the info, but my daughter is 13 right now and does not aspirate, choke, reflux. According to the person who did the video swallow, MD people...
Thank you Dan, I have so far read a few of the abstracts. They make fascinating reading and show how far the research has come in such a relatively short...
My son had a gtube from 18 months till he was 4. Aspiration and severe reflux were the issues. He is 14 and been gtube free for 10 years and I miss it still. ...
That would be correct Marti. Thank you for helping me out too. I can't even think right now. I'm so glad you wrote in. I was thinking there had been someone...
My son has been out of high school for almost 2 years now. He was not diagnosed until the end of his Junior year of HS and thus had already completed his PE...
Angela, I'd also consider seeing Kathryn Wagner at Kennedy Krieger Institute / Johns Hopkins and Katherine Mathews at University of Iowa. Both have very...
Is your daughter set on an IEP at school? the doctor shuld be able to have some control in this matter. you really need to talk to your doctor and also get...
Hi Tim and everyone else, I was looking for info regarding this new study/research lab at the u of Rochester. We visited my daughters doc yesterday. She told...
November 13, 2009 FSH Society, Inc. Scientists, patients, advocates, biotech and pharmaceutical companies, and clinicians from throughout the world gathered at...
Thanks for all the input and advice regarding attending the convention next year. I will definitely go and am looking forward to meeting those of you who...
Not neccessarily. PE tends to be part of the HS curriculum now days an a required credit for a diploma. Doctors notes my excuse her from some activities but...
You may find it very worthwhile to attend. Although it may at first seem painful to see so many of us with this disease it's also enlightening to see how well...
The Doctor's note should suffice. Bring it to her school counselor and they should put her in a different class. I did first semester PE my freshman year, and...
My answer is essentially the same as Jeri's - yes, yes and yes. We would love to see you both. Ray :-) ... From: Jeri To: fshsociety@yahoogroups.com Sent:...
I work as an educational advocate in Michigan....the answers will pertain to what state you are in. In Michigan, there is adaptive PE. Don't know about your HS...
My 15-year-old has progressed quickly over the past year and is struggling with stairs, rising from a chair/floor and even walking. Most all of her muscle...
Sheri, Thanks. It's been years since our MDA/University Clinic suggested they could have a brace custom made -- which at the time was way-overkill (and too...
http://www.newsdaily.com/stories/tre5aa3zy-us-genetherapy-muscles/ Posted 2009/11/11 at 2:42 pm EST Gene therapy strengthens muscles in monkeys WASHINGTON,...
My reply to this is yes, definately do attend with your husband. It shows your support for one thing, but it is a place to learn, to meet people, there are...
My husband is considering attending the FSH convention in Vegas next year. I'm wondering if you veterans could tell me - is it worth me attending as well? Is...
Please post the link to the article when it's online. A group of us here in So. Cal. are in the talking stages for a similar fund raiser and would love to use...
Jim, after years of buying prescribed but worthless braces for my son, I too have been very resistant to braces. But I finally gave in two years ago to my doc...
Eur J Hum Genet. 2009 Nov 4. Analysis of allele-specific RNA transcription in FSHD by RNA-DNA FISH in single myonuclei. Masny PS, Chan OY, de Greef JC,...
Paul and Amy: Thanks and I have written up a "how-to" of sorts -- or maybe, a "how it went." The health editor at the daily newspaper where I work, the Cape...
I've long droop-dragged both feet. To my shock and surprise, suddenly (this year???) my right foot don't push down either. Tripping was the smoking-gun that...
Thank you for this information,I have not seen this before. On Thu, Nov 5, 2009 at 1:41 PM, caramellajane ... [Non-text portions of this message have been...
Having problems with message search?
Fill out this form to ensure your group is one of the first to be migrated to the new message search system.
