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Holly Peay's Discussions

Propose research that is important to you

Started this discussion. Last reply by Michele Jul 1. 11 Replies

Adding your experiences with Duchenne or Becker to ongoing research is vital…Continue

CDC Public Health Grand Rounds: Where in health is disability? Public health practices to include people with disabilities. REBROADCAST w/Live Q&A: January 30, 1:00-2:00 pm ET

Started Jan 29, 2013 0 Replies

NCBDDD’s Division of Human Development and Disability is pleased to announce a rebroadcast and live question and answer session of the CDC Public Health Grand Rounds:  Where in health is disability?…Continue

Tags: NCBDDD, CDC

 

Holly Peay, Vice President, Education & Outreach

Latest Activity


Staff
Holly Peay posted a blog post

PPMD and Santhera Pharmaceuticals Team Up on New Benefit/Risk Study Focused on Pulmonary Therapies

PPMD is proud to announce a collaboration with Santhera Pharmaceuticals on a benefit/risk study that will focus specifically on patient and caregiver preferences regarding pulmonary therapies in the disease, and will be based on data from Santhera’s successful phase III clinical trial of idebenone. One of the…See More
Nov 25

Staff
Holly Peay posted a blog post

Let’s improve DuchenneConnect’s informed consent. Give your opinion by September 7th.

You may be thinking, “An informed consent document? No way do I want to read one of those!” But you can demonstrate the power of our community and help us write a more understandable, responsible informed consent for our community’s registry.As many of you know,…See More
Aug 28
Michele replied to Holly Peay's discussion Propose research that is important to you
" research specific for kids with 3-7 deletions When is the best time for starting steroids? Are there alternatives to starting steroids? "
Jul 1

Staff
Holly Peay posted a blog post

PPMD Benefit/Risk Study Results Published in Clinical Therapeutics

PPMD is thrilled that results from the recent benefit/risk project our team led have been published in Clinical Therapeutics. The article concludes that caregivers are willing to accept a serious risk when…See More
Jun 9
Tammy replied to Holly Peay's discussion Propose research that is important to you
"I wish more there was more research on what to feed our boys early on.  I've read studies about DMD boys requiring much more protein,  however our nutritionist says they do not require anything out of the ordinary prior to steriods,…"
May 1
David replied to Holly Peay's discussion Propose research that is important to you
"One would think by now parents could access a resource that suggests the best lifts and other mobility equipment vendors in the local area. I have learned the hard way that competition usually stinks and we are stuck with one really lousy service…"
Apr 9
Leeandra Arhdeacon replied to Holly Peay's discussion Propose research that is important to you
"I wish teachers would understand that just because he is capable of completing a sentence does not mean that he has the strength to complete every ounce of written homework. His teacher expects written proof of homework even though he has AT to…"
Apr 8
Karen replied to Holly Peay's discussion Propose research that is important to you
"I would like to know some non-ambulatory end points for clinical trials.  The inclusion criteria needs to be expanded. I would like to know why the FDA is moving so slowly on exon skipping. How do you get your son to fall a sleep while using…"
Apr 8
Jason Darienzo replied to Holly Peay's discussion Propose research that is important to you
"Cyberdyne's  HAL Suits is real and being used in Japan for rehabilitation http://www.cyberdyne.jp/english/"
Mar 19
Keith Van Houten replied to Holly Peay's discussion Propose research that is important to you
"Accept my friend request so I can message you my phone number. I'm an engineer, 20+ years in the field, and my son has MD.  I'll give you the same pitch I gave a university lab last year. I don't think a heck of a lot of research…"
Mar 19
frankie replied to Holly Peay's discussion Propose research that is important to you
"I work for one of the premier, non-profit robotics research labs in the world, and we have some wearable robotic technology which I believe could be applied to this application. can you suggest the best targets for developing research sponsorships…"
Mar 19
wainaina muiruri replied to Holly Peay's discussion Propose research that is important to you
"It is not easy being a care giver to dmd patient.My back has been giving me problems for an year now,and one of my shoulders too,got me worried if this goes on like that how will i be in another two years,dont want to end up needing a care giver…"
Mar 19
Keith Van Houten replied to Holly Peay's discussion Propose research that is important to you
"I wish someone would invest some money in robotics, to help people gain more independence and reduce the burden on caregivers.  "
Mar 18

Staff
Holly Peay posted a blog post

Simple Actions: Real data can drive change

For years our community has been making noise so that the scientific and medical communities would listen and focus on Duchenne. They're listening – now we need to talk! Filling out a survey or doing an interview about your family's experiences with Duchenne creates important data. This data is what clinicians,…See More
Mar 18

Staff
Holly Peay's discussion was featured

Propose research that is important to you

Adding your experiences with Duchenne or Becker to ongoing research is vital to improve care and optimize potential therapies.But our community can go further. Let’s set the research agenda! Tell us what you wish you knew (or your doctors knew, or therapists knew, or teachers knew, or researchers knew…) about Duchenne or Becker muscular dystrophy.Be as specific as…See More
Mar 17

Staff
Holly Peay posted a discussion

Propose research that is important to you

Adding your experiences with Duchenne or Becker to ongoing research is vital to improve care and optimize potential therapies.But our community can go further. Let’s set the research agenda! Tell us what you wish you knew (or your doctors knew, or therapists knew, or teachers knew, or researchers knew…) about Duchenne or Becker muscular dystrophy.Be as specific as…See More
Mar 17

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About me:
I am PPMD's Vice President of Outreach and Education.
City:
Richmond VA

Holly Peay's Blog

PPMD and Santhera Pharmaceuticals Team Up on New Benefit/Risk Study Focused on Pulmonary Therapies

Posted on November 25, 2014 at 9:00am 0 Comments

PPMD is proud to announce a collaboration with Santhera Pharmaceuticals on a benefit/risk study that will focus specifically on patient and caregiver preferences regarding pulmonary therapies in the disease, and will be based on data from Santhera’s successful phase III clinical…

Continue

Let’s improve DuchenneConnect’s informed consent. Give your opinion by September 7th.

Posted on August 28, 2014 at 11:25am 0 Comments

You may be thinking, “An informed consent document? No way do I want to read one of those!” But you can demonstrate the power of our community and help us write a more understandable, responsible informed consent for our community’s registry.



As many of you know,…

Continue

PPMD Benefit/Risk Study Results Published in Clinical Therapeutics

Posted on June 9, 2014 at 1:30pm 0 Comments

PPMD is thrilled that results from the recent benefit/risk project our team led have been published in Clinical Therapeutics. The article concludes that caregivers are willing to accept a…

Continue

Simple Actions: Real data can drive change

Posted on March 18, 2014 at 9:30am 0 Comments

For years our community has been making noise so that the scientific and medical communities would listen and focus on Duchenne. They're listening – now we need to talk! Filling out a survey or doing an interview about your family's experiences with Duchenne creates important data. This data…

Continue

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