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Parent Project Muscular Dystrophy (PPMD)

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Parent Project Muscular Dystrophy’s mission is to end Duchenne. We accelerate research, raise our voices in Washington, demand optimal care for all young men, and educate the global community.

email: Community@ParentProjectMD.org
phone: 800-714-5437
City and State:
Hackensack, NJ

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Newborn screening for Duchenne muscular dystrophy

Posted on February 2, 2012 at 10:00am 1 Comment

Guest blog by Kathi Kinnett RN/CNP

 

Currently there is no newborn screening for Duchenne in the United States. However, groundbreaking work from Jerry Mendell’s lab at The Ohio State University may have a hand in changing this.

 

Mendell’s recent pilot study was funded by the Centers for Disease Control (CDC) and…

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Brian Denger commented on PPMD's blog post 'Newborn screening for Duchenne muscular dystrophy'
Thank you for posting this valuable information Kathi. Certainly retesting for "false positives" will be a necessary consideration as well as providing families with appropriate DMD information should such a program be initiated.  The…
yesterday
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Newborn screening for Duchenne muscular dystrophy

Guest blog by Kathi Kinnett RN/CNP  Currently there is no newborn screening for Duchenne in the United States. However, groundbreaking work from Jerry Mendell’s lab at The Ohio State University may have a hand in changing this. Mendell’s recent pilot study was funded by the Centers for Disease Control (CDC) and was performed in Columbus and Cincinnati, Ohio. Mendell utilized dried…See More
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Kira Mullaly joined PPMD's group Tuesday
193 Comments
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Don Cooley commented on PPMD's group 'Becker Parents'
Does anyone know when & where the 2012 Becker MD Conference is being held. We have never attended before however would like to this year. Kathi Cooley
Tuesday
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PPMD replied to David's discussion 'DMD boys and anesthesia'
Hi David, We recommend you view the Surgery & Anesthesia page on our site, which you can print & take to your son's dentist. You should also view & print the comprehensive list of Safe & Unsafe Anesthetics…
Monday
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Brooke Wagoner commented on PPMD's group 'Becker Parents'
Hello everyone! I'm new to the group and I'm actually the sister of the affected. He is 15 now and he hasn't been under any kind of treatment since he was 7. My Grandfather lived til the age of 75 passing n12/25/10. I'm…
Monday
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Ariel Adler commented on PPMD's group 'Duchenne Parents'
I started a page for anyone who has or knows a little boy with dmd. its called End Duchennes. Feel free to join and share all the info u may have.
Monday

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At 11:41am on October 27, 2011, Damien HoweyDamien Howey said…

thank u and i was wondering how we can get stuff going in North Dakota

At 11:37am on October 24, 2011, Anca Felicia LutasAnca Felicia Lutas said…

Thank you!

At 10:35pm on October 7, 2011, Mrs. Joseph WoodMrs. Joseph Wood said…
Thank you so much! We are hoping to connect with others that are successfully finding ways to improve the quality of life for their sons.. and working to find a cure! I would be blessed by the information you mentioned. I'll take a look at that link. Thank you again for the welcome!
At 12:23am on April 23, 2011, Lorrie WolfLorrie Wolf said…

Thank you! This site and your work is such a blessing to our family!

 

Lorrie

At 3:42pm on April 14, 2011, Jeff KoppJeff Kopp said…
Please send me a friend request! I'd send you one but it says I'm maxed out? Weird...
At 10:40am on February 18, 2011, Lorrie WolfLorrie Wolf said…
Thank you so much!  It is wonderful that we parents have a resource like this!
At 3:49pm on February 7, 2011, sana brohisana brohi said…
i m aslo glad to be here thanks u all
At 10:52am on January 25, 2011, Aaron WolfAaron Wolf said…
Thank you!
At 2:19pm on January 25, 2010, Wyatt's Mommy, MelissaWyatt's Mommy, Melissa said…
Ryan, Thank you. I love showing off pictures of Wyatt.

Melissa
At 6:59pm on June 30, 2009, Tracey HartzTracey Hartz said…
Hi Ryan-you messaged me to let you know if I would like a packet of information-I would. ThanksQ!

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