Added by Abby Bronson on July 31, 2017 at 10:46am — No Comments
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…Continue
Added by Annie Kennedy on July 26, 2017 at 9:00am — No Comments
Today, the Senate is expected to start floor debate and motion for a vote on either the Better Care Reconciliation Act (BCRA), which would repeal and immediately replace the Affordable Care Act (ACA), or the Obamacare Repeal Reconciliation Act (ORRA), which would repeal portions of the ACA after a two-year delay. The Senate is working to pass whichever bill is more likely to attain 50 votes.
The Congressional Budget Office released reports last week that…Continue
Added by Annie Kennedy on July 25, 2017 at 9:05am — No Comments
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…Continue
Added by Annie Kennedy on July 19, 2017 at 12:00pm — No Comments
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…Continue
Added by Kathi Kinnett on July 17, 2017 at 9:35am — No Comments
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!
Added by Kathi Kinnett on July 16, 2017 at 8:30pm — No Comments
Today Parent Project Muscular Dystrophy (PPMD) named Gillette Children's Specialty Healthcare Neuromuscular Clinic (Gillette) our 16th …Continue
Added by PPMD on July 13, 2017 at 11:21am — No Comments
Added by PPMD on June 30, 2017 at 1:49pm — No Comments
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…Continue
Added by PPMD on June 28, 2017 at 2:19pm — No Comments
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…Continue
Added by Abby Bronson on June 23, 2017 at 2:00pm — No Comments
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…Continue
Added by Ryan Fischer on June 21, 2017 at 10:00am — No Comments
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…Continue
Added by ramon ciriaco viaña ortiz on June 16, 2017 at 1:04pm — No Comments
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…Continue
Added by PPMD on June 15, 2017 at 11:53am — No Comments
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…Continue
Added by Ryan Fischer on June 15, 2017 at 11:30am — No Comments
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…Continue
Added by PPMD on June 15, 2017 at 11:30am — No Comments
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…Continue
Added by Pat Furlong on June 14, 2017 at 12:30pm — No Comments
PPMD's Pat Furlong
Earlier this month, we had the privilege of having our fourth stop in 2017 on …Continue
Added by PPMD on June 14, 2017 at 10:30am — No Comments
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…Continue
Added by PPMD on June 6, 2017 at 8:47am — No Comments
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…
Added by Ann Lucas on June 5, 2017 at 9:30am — No Comments
Added by PPMD on June 2, 2017 at 11:30am — No Comments