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All Blog Posts Tagged 'PPMD Blog' (720)


Staff
PPMD's Bone Health Workshop Published

May 12-13, 2016, PPMD convened a workshop of 48 opinion leaders, research experts and clinicians from the US and Canada, on the subject of Duchenne and bone biology. Bone health has long been a…

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Added by Kathi Kinnett on August 14, 2017 at 10:00pm — No Comments


Staff
Understanding Clinical Trials in Duchenne

Hope is critical to survival. Hope helps us get through those times of darkness with the thought that there is something new on the horizon, a potential new destination. Hope enables us to focus on meeting challenges even in the midst of adversity. Hope allows us to see that there might be…

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Added by Ann Lucas on August 7, 2017 at 2:00pm — No Comments


Staff
PDUFA VI Passes the Senate – Now Moves to President’s Desk to be Signed Into Law

The PDUFA VI bill – known as FDA Reauthorization Act in the House (FDARA) – passed the House of Representatives early in July with strong bi-partisan support. It then moved to the Senate but consideration was delayed until after the Senate healthcare reform deliberations were completed. Today, though, we are excited that a companion bill (mirroring the House version) passed in the Senate! It will now move to the President’s desk where it is expected…

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Added by Annie Kennedy on August 3, 2017 at 8:30pm — No Comments


Staff
UPDATE - Action Alert: Your Calls Are Still Needed! Tell Your Senator to Vote NO on the Senate Health Bill

Yesterday the Senate voted 51-50 to move forward on healthcare reform legislation -- but no specific bill was actually voted on. The Senate has committed to passing something this week. Once passed, the Senate bill will then have to return to the House for passage or conferencing (if it differs from…

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Added by Annie Kennedy on July 26, 2017 at 9:00am — No Comments


Staff
Pulmonary Outcomes Workshop Summary

In April 2016, PPMD convened a workshop to assess the measures used to evaluate pulmonary strength, air flow and lung volumes. Thanks to the tireless effort of Dr. Jonathan Finder, this summary has now…

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Added by Kathi Kinnett on July 17, 2017 at 9:35am — No Comments


Staff
PJ Nicholoff Steroid Protocol Published

Sadly, I never had the honor of meeting PJ Nicholoff, but I’ve met his parents. And if PJ was anything like his father, Brian, he was vibrant, compassionate, caring, engaged and tenacious!

 …

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Added by Kathi Kinnett on July 16, 2017 at 8:30pm — No Comments


Staff
PPMD Designates Gillette Children’s Specialty Healthcare a Certified Duchenne Care Center

Today Parent Project Muscular Dystrophy (PPMD) named Gillette Children's Specialty Healthcare Neuromuscular Clinic (Gillette) our 16th …

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Added by PPMD on July 13, 2017 at 11:21am — No Comments


Staff
PPMD Convenes International Experts for Inflammation and Immunity in Duchenne Muscular Dystrophy Workshop

Today, PPMD is convening medical experts from around the world for a workshop exploring inflammation and immunity in Duchenne on the eve of our 23rd Annual Connect Conference.



In January, PPMD organized a Critical…

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Added by PPMD on June 28, 2017 at 2:19pm — No Comments


Staff
PPMD Research Update: June 2017

An Overview of Your Impact in Action



We are less than a week away from PPMD’s Annual Connect Conference, where researchers and industry from around the world will provide…

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Added by Abby Bronson on June 23, 2017 at 2:00pm — No Comments


Staff
PPMD Launches New Resource Center for Families

Navigating life with Duchenne can be daunting and time consuming for families. We rely on each other to share wisdom and information in order to make the process smoother and life a bit easier. The best guidance we can get is from those who have been through a given situation, sharing what they’ve learned to help others navigate resources that exist.

 

PPMD strives to find…

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Added by Ryan Fischer on June 21, 2017 at 10:00am — No Comments


Staff
FDA Hiring Freeze Lifted

Recently, FDA Commissioner Scott Gottlieb announced that the hiring freeze, instituted on January 23, has been lifted.

This reversal means that the FDA can begin to fill vacancies – needed resources for continued research into rare disease treatments and for the review and…

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Added by PPMD on June 15, 2017 at 11:53am — No Comments


Staff
65 Members of Congress Send Letter of Strong Support for Duchenne Priorities for Next Year’s Budget

With Congress not wrapping up spending bills for Fiscal Year 2017 until we were more than 7 months into the fiscal year, the FY 2018 budget and appropriations (funding) cycle will be interesting to say the least. The Trump Administration released a preliminary — or “skinny” budget -- in March but…

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Added by Ryan Fischer on June 15, 2017 at 11:30am — No Comments


Staff
PPMD Signs On to DoD Funding Letters

Once again, PPMD has signed on to letters to leaders in both the House and Senate, requesting they continue to support the critical and highly successful defense health research programs funded through the Congressionally Directed Medical Research Programs (CDMRP) at the…

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Added by PPMD on June 15, 2017 at 11:30am — No Comments


Staff
Celebrate Dad & Your Gift is Doubled!

This Father’s Day, I hope you will join me in celebrating the dads in this community. They are often the unsung heroes of our community. They are role models for our sons, providing for our families. Their hearts ache just as profoundly when our children are hurting. Their hearts love just as unconditionally.

That’s why this Father’s Day, I…

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Added by Pat Furlong on June 14, 2017 at 12:30pm — No Comments


Staff
PPMD’s #EverySingleOne Tour: Gainesville, FL

PPMD's Pat Furlong 

 

Earlier this month, we had the privilege of having our fourth stop in 2017 on …

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Added by PPMD on June 14, 2017 at 10:30am — No Comments


Staff
DuchenneConnect Expands Down Under!



Last year advocates from Save Our Sons Duchenne Foundation (SOS) approached PPMD about partnering to have a patient report registry in Australia. They were worried because at the time there were no…

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Added by Ann Lucas on June 5, 2017 at 9:30am — No Comments


Staff
PTC Therapeutics Provides EMFLAZA™ (Deflazacort) FAQ Update

PTC Therapeutics has provided an update regarding EMFLAZA (see below). Please visit EMFLAZA.com for answers to some of the most frequently asked questions PTC has…

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Added by PPMD on June 2, 2017 at 11:30am — No Comments


Staff
Get in the Game with Coach To Cure MD on September 30th!

Over the last 9 years, Coach To Cure MD has raised $1.5 million thanks to families like yours! Every dollar you have raised has helped us advance promising research, which led to two drug approvals for Duchenne in just the last year…

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Added by Danielle Garrigan on June 1, 2017 at 3:30pm — No Comments


Staff
Finding Your Light: Fighting Depression in Duchenne

PPMD's Kathi Kinnett, MSN, CNP worked with Molly Colvin, PhD, Neuropsychologist at Massachusetts General Hospital and Ginny Ward, an amazing mom living in Colorado with her children, including John, a young man living with Duchenne, to develop this important material. …

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Added by Kathi Kinnett on May 25, 2017 at 11:00am — No Comments

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