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All Blog Posts (1,697)


Staff
FY 18 Labor HHS Report Language Released: Our Duchenne Community is Stronger Than Ever!

Transitions are hard. That’s the truth whether you’re talking about a new school year, a new job, or even a new Congress. And, in particular, new Presidential Administrations are always complex political climates in Washington.

 

But this year, our Duchenne community came together once again and embraced the challenge of this latest transition. With so many new Members of Congress and Federal Agency leadership in flux, we knew that our 2017 February…

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Added by Annie Kennedy on July 19, 2017 at 12:00pm — 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 to Host Duchenne Drug Development Roundtable During 23rd Annual Connect Conference

 
PPMD will host our annual Duchenne Drug Development Roundtable…
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Added by PPMD on June 30, 2017 at 1:49pm — 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

JOSE DAVID VIAÑA DIAZ CARTAGENA COLOMBIA

HOLA  MI  HIJO JOSE DAVID  NECESITA DE SU APOYO  SOMOS  UNA  FAMILIA DE ESCASOS  RECURSOS  ECONOMICOS  DE CARTAGENA  COLOMBIA  ,ERAN  DOS HERMANOS  CON  DUCHENNE  YA FALLECIO  UNO EL  1 DE DICIEMBRE DEL  2011 A  LOS  17  AÑOS  .POR LA  FALTA  DE  UNA  BUENA  ALIMENTACION  Y  LA  CASA  EN  MAL  ESTADO  LE  DIO  UNA  FUERTE  NEUMONIA  EL  CUAL  LE  PROBOCO  EL  PARO  RESPIRATORIO...POR  FAVOR  AYUDEN  A  MI  OTRO  HIJO   CON  DUCHENNE  JOSE DAVID  VIAÑE DIAZ  A  QUE  TENGA  UNA  MEJOR CALIDAD…

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Added by ramon ciriaco viaña ortiz on June 16, 2017 at 1:04pm — 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
PTC Therapeutics Announces FDA Advisory Committee Meeting for Ataluren

PTC Therapeutics, Inc. today announced that the FDA has notified the company of the tentative scheduling of a Peripheral and Central Nervous Systems Drugs Advisory Committee meeting on September 28, 2017 to review the new drug application (NDA) for ataluren (Translarna™). This is another important moment for our community and we look forward to the opportunity to share our collective experiences with Translarna with the FDA. As details on this Ad Comm become…

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Added by PPMD on June 6, 2017 at 8:47am — 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
FDA Makes Determination Regarding In-Dwelling Ports

Time and again in our Duchenne community, we see brave kids and their warrior parents work to change the landscape. After all, it’s that exact spirit upon which PPMD was founded. And with that same spirit that family after family has transformed their personal moments into broader movements that have benefited us all.

 

On May 18, the FDA Pediatric Advisory Committee convened to determine whether to allow for the protocol of Sarepta’s ESSENCE trial to…

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Added by Annie Kennedy on May 26, 2017 at 2:45pm — 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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