The Ensuring Access to Clinical Trials Act (EACT) Passes Senate, then House;
We are thrilled to report that the Ensuring Access to Clinical Trials Act of 2015 (EACT) passed a vote in the House of Representatives (after passing the Senate by unanimous consent in July) and will go to the President for his signature! This a result of everyone who contacted their Representative including over 400 families in this community alone! (Source: Parent Project Muscular Dystrophy)
Source: Parent Project Muscular Dystrophy - September 29, 2015 Category: Neurology Source Type: news
“Hullabaloo in Duchenne”
PPMD believes in treatments for ALL. We believe that all safe and effective treatments deserve quick approval. We believe that patients, that our loved ones living with Duchenne, deserve options. Maybe you like Tylenol over Advil you have a choice to take the drug that best treats your symptoms. We need to support companies as they approach the finish line so that the decision on what treatment you or your child is prescribed is a decision you and your physicians make. Not a situation where you have no options. (Source: Parent Project Muscular Dystrophy)
Source: Parent Project Muscular Dystrophy - September 28, 2015 Category: Neurology Source Type: news
Update of the Duchenne Care Considerations
PPMD’s Kathi Kinnett and Annie Kennedy have spent the last two days in Atlanta at the CDC working on an updated edition of the Care Considerations. Read Kathi’s blog to find out what the extraordinary team of Duchenne care experts assembled at the CDC have been focused on and what changes will be in the next iteration of the Care Considerations. (Source: Parent Project Muscular Dystrophy)
Source: Parent Project Muscular Dystrophy - September 25, 2015 Category: Neurology Source Type: news
Don't Let Critical Senate Legislation Stall!
On Friday, September 25th, patient advocates from across the country will unite in a day of action to urge the Senate to make medical innovation a top priority. Please help us make a difference by calling your Senators and using social media to get their attention. A delay in this legislation is a delay in life-saving treatment for patients. (Source: Parent Project Muscular Dystrophy)
Source: Parent Project Muscular Dystrophy - September 25, 2015 Category: Neurology Source Type: news
FDA Advisory Committee Meetings: An Overview of the Process & Ways to be Involved
On September 2nd, PPMD convened a public webinar for the Duchenne community focused on FDA Advisory Committee Meetings (or “Ad Comms”). After working closely with representatives from FDA, we are excited to share some of the FAQs that arise regarding the Ad Comm process, as well as some specifically relevant to our community. As we get closer to possible dates for these meetings, we will add information as it become s available. < div class="feedflare" > < a href="http://feeds.parentprojectmd.org/~ff/ppmd?a=tuQbBsffx84:YjUQLfXMpt0:yIl2AUoC8zA" > < img src="http://feeds.feedburner.com/~ff/ppmd?d=yIl2AUoC8zA" border="0" ...
Source: Parent Project Muscular Dystrophy - September 24, 2015 Category: Neurology Source Type: news
FDA Advisory Committee Meetings: An Overview of the Process & Ways to be Involved
On September 2nd, PPMD convened a public webinar for the Duchenne community focused on FDA Advisory Committee Meetings (or “Ad Comms”). After working closely with representatives from FDA, we are excited to share some of the FAQs that arise regarding the Ad Comm process, as well as some specifically relevant to our community. As we get closer to possible dates for these meetings, we will add information as it becomes available. (Source: Parent Project Muscular Dystrophy)
Source: Parent Project Muscular Dystrophy - September 24, 2015 Category: Neurology Source Type: news
Urge your Representative to Pass the Ensuring Access to Clinical Trials Act of 2015 (H.R. 209)
We need you to encourage your House member to pass the Ensuring Access to Clinical Trials Act of 2015 (H.R. 209), let them know that clinical trial access matters to you and your family, and help us and protect patients who are participating in potentially life-saving clinical studies. (Source: Parent Project Muscular Dystrophy)
Source: Parent Project Muscular Dystrophy - September 21, 2015 Category: Neurology Source Type: news
End Duchenne eNews: We See Strength in Teamwork
Catch up on the latest research and community updates in this month's End Duchenne eNews! (Source: Parent Project Muscular Dystrophy)
Source: Parent Project Muscular Dystrophy - September 17, 2015 Category: Neurology Source Type: news
PPMD Receives $30,000 STRIVE Award From PTC Therapeutics
On the eve of the 2nd Annual World Duchenne Awareness Day, PPMD is excited to be one of five recipients of PTC Therapeutics’ STRIVE Awards! This $30,000 grant will be used to help PPMD launch a campaign for healthcare professionals and at-risk women to raise awareness about carrier issues in the Duchenne community. (Source: Parent Project Muscular Dystrophy)
Source: Parent Project Muscular Dystrophy - September 17, 2015 Category: Neurology Source Type: news
Bennet, Burr, Warren, Hatch Introduce Bill to Help Patients by Facilitating Faster Development of Drugs for Rare Diseases
We are thrilled to announce that the Advancing Targeted Drugs for Rare Diseases Act bill has dropped in the Senate! PPMD has been working with the Senate HELP Committee and Sarepta for the last several months on this 21st Century Cures provision which morphed into stand-alone legislation. (Source: Parent Project Muscular Dystrophy)
Source: Parent Project Muscular Dystrophy - September 15, 2015 Category: Neurology Source Type: news
Webinar Recording: What is an Ad Comm?
PPMD asked the FDA to participate in a public webinar on September 2 – our most attended webinar to date. The webinar recording is now available for replay. Find out basic information about how Ad Comms work and what role you can play. (Source: Parent Project Muscular Dystrophy)
Source: Parent Project Muscular Dystrophy - September 14, 2015 Category: Neurology Source Type: news
Webinar Recording: Getting Involved with Coach to Cure MD!
PPMD presented a webinar, Getting Involved with Coach to Cure MD on Wednesday, August 26th at 1pm eastern. (Source: Parent Project Muscular Dystrophy)
Source: Parent Project Muscular Dystrophy - August 26, 2015 Category: Neurology Source Type: news
PPMD ’s DuchenneConnect to Receive $1.4 Million Funding Award from PCORI
DuchenneConnect, led by PPMD, has been approved for a three year, $1.4 million funding award by PCORI the Patient Centered Outcomes Research Institute! This funding award allows DuchenneConnect to continue our work as a member of PCORnet, the National Patient-Centered Clinical Research Network. < div class="feedflare" > < a href="http://feeds.parentprojectmd.org/~ff/ppmd?a=3DYzjB0BPR0:pEmUvM_TlKw:yIl2AUoC8zA" > < img src="http://feeds.feedburner.com/~ff/ppmd?d=yIl2AUoC8zA" border="0" > < /img > < /a > < a href="http://feeds.parentprojectmd.org/~ff/ppmd?a=3DYzjB0BPR0:pEmUvM_TlKw:qj6IDK7rITs" > < img src="http://feeds.feedbu...
Source: Parent Project Muscular Dystrophy - August 13, 2015 Category: Neurology Source Type: news
PPMD’s DuchenneConnect to Receive $1.4 Million Funding Award from PCORI
DuchenneConnect, led by PPMD, has been approved for a three year, $1.4 million funding award by PCORI the Patient Centered Outcomes Research Institute! This funding award allows DuchenneConnect to continue our work as a member of PCORnet, the National Patient-Centered Clinical Research Network. (Source: Parent Project Muscular Dystrophy)
Source: Parent Project Muscular Dystrophy - August 13, 2015 Category: Neurology Source Type: news
PPMD Awards $70,000 Grant to Talem Technologies as Part of Robotics Initiative
PPMD is proud to award Talem Technologies with a grant for over $70,000 to support a pilot study of their X-Ar exoskeletal arm technology. This grant is a direct result of your donation this spring for our Robotics Initiative. We believe in the X-Ar arm and other technologies that we believe will maintain muscle function and foster independence. Thank you for supporting our robotics program and congratulations to Talem Technologies! (Source: Parent Project Muscular Dystrophy)
Source: Parent Project Muscular Dystrophy - August 13, 2015 Category: Neurology Source Type: news
