BREAKING NEWS: MD-CARE Act Passed!
Today – September 18, 2014, our Duchenne community once again made history by demonstrating that nothing can stop us. Today, the MD-CARE Act Amendments of 2014 passed! WE DID IT!!
Upcoming Webinar: Early Pulmonary Care
PPMD will present a 3-part webinar series on the pulmonary care of people living with Duchenne starting next week. Our first webinar on Wednesday, September 24 at 2 PM EDT will address Early Pulmonary Care.
PPMD Names Seattle Children's Hospital Certified Duchenne Care Center
Seattle Children's is the fourth center to be certified by PPMD, recognizing the hospital's dedication to improving care for people living with Duchenne.
End Duchenne eNews: Here to Help
Catch up on the latest research and community updates in this month's End Duchenne eNews, and learn how you can help us tackle Duchenne!
Action Alert: Tell the Senate to take action on MD-CARE Act!
Congress has returned from their Summer recess and it is time to re-engage them on the MD-CARE Act! We need each member of our community to reach out to your Senators and urge them to tell leadership to bring the MD-CARE Act to the floor for a vote. Take action now!
PPMD Welcomes Annie Kennedy as Senior Vice President of Legislation & Public Policy
We are thrilled to welcome Annie Kennedy, our new Senior Vice President of Legislation and Public Policy! Annie joins PPMD after being with the Muscular Dystrophy Association (MDA) for 25 years, first as a camp volunteer and as an employee for the last 16 years. Annie’s focus will be on advancing public policy, addressing transition issues for people with Duchenne, and working on newborn screening issues.
PPMD Submits Cardiac Recommendations to FDA
During discussions at a working group meeting designed to explore contemporary issues in Duchenne cardiology, the FDA indicated interest in receiving recommendations for cardiac surveillance and cardiac markers, to be included in current and future Duchenne clinical trials. In response to those questions, recommendations were developed by the Expert Working Group and submitted to the FDA for consideration for inclusion in the draft guidance.
The Breath of Life: New 3-Part Pulmonary Webinar Series
The lungs require the strength of many muscles to help a person to breathe and cough. As people with Duchenne grow older, the respiratory muscles, like the skeletal muscles, become weaker. Like the heart, every person with Duchenne will have pulmonary issues of some type. This is such an important area of care and concern that we pulled together pulmonary experts from across the US to address important issues during a webinar series this fall.
Welcoming Drs. Dongsheng Duan & Jill Rafael-Fortney to PPMD's Scientific Advisory Committee
We are excited to welcome Dongsheng Duan, PhD and Jill Rafael-Fortney, PhD to our Scientific Advisory Committee. The committee, chaired by PPMD Senior Scientific Advisor Dr. Lee Sweeney, expertly reviews every grant that comes in and offers funding or advice on how to proceed to garner funding in the future.
Cincinnati Children’s Named Certified Duchenne Care Center By Parent Project Muscular Dystrophy
Congratulations to Cincinnati Children's Hospital Medical Center on becoming a Certified Duchenne Care Center! Dr. Brenda Wong and team have touched the lives of so many families in this community and are a leader in comprehensive care. Thank you for your hard work!
PPMD appreciates FDA’s interest in these efforts to provide the agency with stakeholder views about trial processes.
August 18, 2014 | Read more