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Revised Duchenne Anesthesia Recommendations 2015

Posted by Kathi Kinnett on July 2, 2015 at 10:00am 0 Comments

Historically, people with Duchenne have been told that using inhaled anesthetics can cause malignant hyperthermia (“MH”; extremely high body temperature), a condition causing rhabdomyolysis (breakdown of skeletal muscle tissue causing the release of…

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Discussions

Exon Skipping for Deletion 3-7???

Started by Dakota Ferrazzi in Research 7 hours ago. 0 Replies

participating in research trials

Started by Leresa in Research. Last reply by David 12 hours ago. 7 Replies

similarities in diagnosis

Started by Leresa in General Discussion. Last reply by David 12 hours ago. 1 Reply

Tamoxifen?

Started by Galia Ben Ishay in Research. Last reply by Galia Ben Ishay yesterday. 2 Replies

Latest Activity

Dakota Ferrazzi posted a discussion

Exon Skipping for Deletion 3-7???

is there anything on 3-7 ?? haven't seen anything...See More
7 hours ago
Profile IconParent Project Muscular Dystrophy via Facebook
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As we celebrate Independence Day weekend, we have asked some of the PPMD Adult Advisory Committee (PAAC) to share what Independence means to them. "Thanks to the ADA, Medicaid, Duchenne research and treatments from the MD-CARE Act and NIH, FDA, and incredible legislation passed every day (such as the Affordable Care Act and Able Act), I am able to follow my lifelong dream of being an entrepreneur. In America, those of us with disabilities – even as severe as Duchenne – have…

See More
Facebook7 hours ago · Reply
Dee added a discussion to the group Memorial Wall
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Duchenne Memorial Wall

Currently DMD is a fatal disease. Families, Parents are fighting for their son's life. A freedom our boys wish to be free from this disease- independence to live on their own, to marry and have a family. Which we are pleased to learn many ARE living this life now.  That means something is working properly.  Proper care and treatment is working for many.  Thankfully.Yet, unfortunately and sadly, what may work for some may not work for others.  And we never know whom it works well for until the…See More
8 hours ago
Dee commented on PPMD's blog post What Does Independence Mean to the Duchenne Community?
"To me, Independence means...Well even if I know Tim is gone, there is still thousands of other boys who suffer from the same disease and I don't want them to go through what Tim and other boys have gone through. They need that FREEDOM from this…"
9 hours ago
Profile IconParent Project Muscular Dystrophy via Facebook
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As we celebrate Independence Day weekend, we have asked some of the PPMD Adult Advisory Committee (PAAC) to share what Independence means to them.

What Does Independence Mean to the Duchenne Community?

community.parentprojectmd.org

July marks the 25th Anniversary of Americans with Disabilities Act (ADA), 50th Anniversary of Medicaid, and the dawning of a…

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Facebook10 hours ago · Reply

Staff
PPMD posted a blog post

What Does Independence Mean to the Duchenne Community?

July marks the 25th Anniversary of Americans with Disabilities Act (ADA), 50th Anniversary of Medicaid, and the dawning of a new age therapy development for our Duchenne community. But - as we all know - with new opportunities, come new challenges. As people with Duchenne grow up and grow into adulthood, barriers to…See More
10 hours ago
David replied to Leresa's discussion participating in research trials
"No growth hormones, no."
12 hours ago
David replied to Leresa's discussion similarities in diagnosis
"Have you joined Duchenne Connect? This is exactly the info they gather across the community"
12 hours ago
Profile IconParent Project Muscular Dystrophy via Facebook
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Independence Day for Duchenne: July marks the 25th Anniversary of Americans with Disabilities Act (ADA), 50th Anniversary of Medicaid, and the dawning of a new age of therapy development for our Duchenne community. But - as we all know - with new opportunities, come new challenges. As people with Duchenne grow up and grow into adulthood, barriers to 'independence' are found in our federal/ state/ local systems, policies, and resources. As we at PPMD continue to push for access to…

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Facebookyesterday · Reply
Dave Click posted a blog post

YOU ARE YOU...

We have a bedtime routine, Alex and I, a bonding conversation that has happened every night, without fail, since he has been about three years old. It's a tender moment between father and son, one where Alex shares his hopes and fears, and I’m fortunate to see life from an unique perspective. He’ll tell me about a girl he likes or a disagreement with a friend. He’ll tell me about a new video game that’s coming out soon or a movie he’d like to see. He’ll even ask teenaged questions about girls,…See More
yesterday
Galia Ben Ishay replied to Galia Ben Ishay's discussion Tamoxifen?
"Thanks a lot for this update..."
yesterday
Leresa posted a discussion

similarities in diagnosis

Mj has a partial duplication including exons 2-47. I was wondering how unique my son's case is. Does anyone else have the same classification? I'm just wondering if there is any similarities in the rate progression and timeline that DMD will have on our sons.Thanks all!See More
yesterday
Profile IconAlison Ballard, Kaylen Smith and Kristine Hancock joined PPMD Community
Thursday

Staff
Kathi Kinnett's blog post was featured

Revised Duchenne Anesthesia Recommendations 2015

Historically, people with Duchenne have been told that using inhaled anesthetics can cause malignant hyperthermia (“MH”; extremely high body temperature), a condition causing rhabdomyolysis (breakdown of skeletal muscle tissue causing the release of myoglobin, a muscle protein that damages the kidneys) and hyperkalemia…See More
Thursday

Staff
PPMD replied to Galia Ben Ishay's discussion Tamoxifen?
"Hi Galia -- We recently updated our Tamoxifen FAQ sheet, which provides a basic overview of the research project: TAMOXIFEN - Using tamoxifen to improve muscle strength in Duchenne and Becker"
Thursday
Dakota Ferrazzi replied to Dakota Ferrazzi's discussion anyone 20 years or older with DMD still walking?
"hey donna i have deletion 3-7 i was looking at your profile its crazy how much me and your son are alike with duchenne.. my mom said she would love to talk to you over the phone. "
Thursday
 
 
 

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