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Holly Peay's Discussions

Propose research that is important to you

Started this discussion. Last reply by David Apr 9. 9 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

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

Staff
Holly Peay posted a blog post

DuchenneConnect Receives $970,000 Award

DuchenneConnect was recently awarded close to $1 million dollars in funding from PCORI, the Patient-Centered Outcomes Research Institute! DuchenneConnect will be one of 29 members of PCORnet, the National Patient-Centered Clinical Research Network.  The goal of PCORnet is to create a large, highly representative, national network for conducting clinical research.  This is especially exciting because we hope to ask and answer important questions…See More
Feb 19

Staff
Holly Peay posted a blog post

FDA Public Workshop Report – Our Message Is Having an Impact

Last week, Pat Furlong and I were invited by the FDA to their meeting on Complex Issues in Developing Drugs and Biological Products for Rare Diseases. I was asked to participate on the Tolerating Risk and Uncertainty in Pediatric Clinical Trials Panel, in recognition of the work PPMD has done to: Systematically collect data…See More
Jan 15

Staff
Holly Peay favorited PPMD's blog post My BRAVE Story: We don't have time to wait
Dec 6, 2013

Staff
Holly Peay posted a blog post

What do you think about clinical trials?

Though clinical trials aren’t for everyone, each trial helps move us toward better treatments.  What do you think about clinical trials?  Share your thoughts, so PPMD can give the best advice to professionals running trials.At the recent World Muscle Society and Child Neurology Society meetings, we heard reports from…See More
Nov 13, 2013

Staff
Holly Peay is attending PPMD's event
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Webinar: Sarepta at Eastern Time Zone

October 17, 2013 from 12pm to 1pm
Sarepta Therapeutics will host a webcast and conference call for the Duchenne community on Thursday, October 17, 2013, beginning at 12:00 p.m., Eastern Time. Chris Garabedian, president and chief executive officer, and Edward Kaye, M.D., chief medical officer, will provide information and answer questions about Sarepta’s Duchenne development program, including current and planned clinical trials, and Let’s Skip Ahead, a new online resource…See More
Oct 16, 2013

Profile Information

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

Holly Peay's Blog

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

DuchenneConnect Receives $970,000 Award

Posted on February 19, 2014 at 12:30pm 0 Comments

DuchenneConnect was recently awarded close to $1 million dollars in funding from PCORI, the Patient-Centered Outcomes Research Institute! 

PCORI

DuchenneConnect will be one of 29 members of PCORnet, the National Patient-Centered Clinical Research Network.  The goal of PCORnet is to create a large, highly representative, national network for conducting clinical research.  This is especially…

Continue

FDA Public Workshop Report – Our Message Is Having an Impact

Posted on January 15, 2014 at 11:00am 0 Comments

Last week, Pat Furlong and I were invited by the FDA to their meeting on Complex Issues in Developing Drugs and Biological Products for Rare Diseases. I was asked to participate on the Tolerating Risk and Uncertainty in Pediatric Clinical Trials Panel, in recognition of the work PPMD has done…

Continue

What do you think about clinical trials?

Posted on November 13, 2013 at 1:04pm 0 Comments

Though clinical trials aren’t for everyone, each trial helps move us toward better treatments.  What do you think about clinical trials?  Share your thoughts, so PPMD can give the best advice to professionals running trials.

At the recent World Muscle…

Continue

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