Following recent overwhelming passage in the Senate, The Prescription Drug User Fee Act comes closer to becoming law after swift passage in the House of their version of the bill last night by a vote of 387-5. Both bills now move to conference for reconciliation.…
Added by Ryan Fischer on May 31, 2012 at 10:30pm — No Comments
Hello everyone! I wish I could say that I had written a wonderful book like Mary Lou Weisman's Intensive Care. However I did right a good one! Flying Solo is the first in a series of books which will wind up telling the story of my own journey coping and battling Duchenne's.
This first part of the story however, FLYING SOLO, is about a very courgeous, independent woman, Nora. Nora is a 1960s suburban catholic housewife from New Orleans. On a whim, she learns to…Continue
Added by Jeanette Vaughan on May 30, 2012 at 2:19pm — No Comments
As the U.S. Senate continues debate on legislation that seeks to accelerate delivery of safe and effective therapies to patients and to increase the patient voice as part of the therapy review process, PPMD is pleased to offer our enthusiastic endorsement of the legislation.
Over the past several months, PPMD has fought to include several key provisions included in the Senate version of the Food and Drug Administration Safety and Innovation Act, commonly referred to as the…Continue
I have been so focused on thinking I can help save my son’s life that I am avoiding, perhaps evading, mine and his actual current lives. I’m not getting my work done. I don’t eat well. I hardly get outside or exercise anymore. I feel mentally exhausted and frustrated by the time evening rolls around and I lay awake most nights crying. Those dark, lonely hours, reveal the…Continue
Added by Tim "1Step" Rice on May 17, 2012 at 4:00pm — No Comments
Few pieces of legislation may be as peculiar – and as important to the development of drugs and devices in this country – as the package of bills known as Food and Drug Administration (FDA) Prescription Drug User Fees Acts, known as PDUFA, or user fees for short. Born out of a frustration – amplified by the lack of therapies to respond to the AIDS epidemic – that FDA was taking too long to review drug applications, Congress enacted the first such law 20 years ago, in 1992. The law set out…Continue
Added by Ryan Fischer on May 17, 2012 at 10:28am — No Comments
Register for the 2012 Annual Connect ConferenceContinue
Added by PPMD on May 17, 2012 at 9:30am — No Comments
Last week I participated in a pod cast called Kitchen Table Conversations with HerSelf First. I really enjoyed the conversation with Sheila Moeschen, Kathy Kinnett, and Kris Hersom. It was truly an enlightening conversation! Click here to listen to the Podcast.
As I was preparing for this conversation, I realized that a lot of time is spent focusing on my son. As…Continue
Added by Christine Piacentino on May 10, 2012 at 11:30am — No Comments
You can save money and help raise money for PPMD at the same time. Switch your energy provider if you live in MD, NJ, NY, IL, PA, TX, or CONN. Each month you pay your bill PPMD will get $4.00 - $50.00 per customer/ per month. So click on the link below for your rate quote, just fill out form as if you are switching. I had an electric bill of $8.62 with Ambit Energy and you can too. Call me for more information or email me.
TanyaTreas@aol.com In subject put…Continue
Added by Tanya Fleming on May 9, 2012 at 10:26pm — No Comments
I learned a few new things about my son today. Asked to name three people, real or fictitious, living or deceased, who he would like to have dinner with, here's who he picked: His grandpa Stalling (who died eight years ago); our old chocolate lab Sage (who died four years ago), and Katy Perry (who is still very much alive and singing).
Now I have "I kissed a…Continue
Added by David Stalling on May 7, 2012 at 9:30pm — No Comments
Cory Stalling is a fifth grader from Missoula, Montana. On July 8, a Run For Our Sons team will again pound the streets of Missoula on behalf of Cory as part of the Missoula Marathon. Cory and his family have been a big part of this community and now are taking another step to raise awareness, with a just…Continue
Getting it all done and figuring out what needs to be done first. Everyone, whether you are dealing with Duchenne or not, feels the pressure of time and faces a daunting, ever-growing to-do list. But when you’re dealing with a disorder like Duchenne, that clock ticks louder. In their monthly co-blog, PPMD President Pat Furlong and Colorado FACES coordinator, Ivy Scherbarth try to sort through priorities and what in our lives deserves more of our time and energy. Please take a moment…Continue
I am often so focused on wanting to save my own son's life that I sometimes forget how many boys and their families and friends are affected by this terrible disease -- More than 300,000 boys worldwide have Duchenne Muscular Dystrophy!
As most of you know by now, I am circulating a petition,…Continue
Added by David Stalling on May 5, 2012 at 9:00pm — No Comments
Added by Tim "1Step" Rice on May 5, 2012 at 10:30am — No Comments
For the past month I felt like the old TV show MacGuyver more so than normal or the line from Project Runway, “Make it work!” At the end of March I finished a five year assignment in Buffalo NY. I live in Rochester, NY. For anyone that doesn’t know how far that is, from my home to my office I logged approximately 176 miles round trip; about three hours a day driving. Most people…Continue
Added by Christine Piacentino on May 5, 2012 at 7:41am — No Comments
Thank you for participating in last week’s webinar on DuchenneConnect data! Many of you asked questions during the webinar that we were unfortunately unable to get to within the hour. We have done our best to answer all questions submitted.
Please see the list of Q&A's following the webinar video below, and let me know if you have any additional follow up questions!…
Added by Ann Martin on May 2, 2012 at 12:00pm — No Comments
06880 is the zip code for Westport, Connecticut, the town I grew up in. It is also the name of a popular, first-rate Blog created by lifelong Westporter Dan Woog.
Dan is an accomplished writer and teacher, well-respected public speaker, award-winning columnist, and longtime head coach of one of the most successful high…Continue
Added by David Stalling on May 2, 2012 at 1:16am — No Comments
My son passed on March 21st. Although it was peaceful, it was the most heart wrenching thing I have ever been through. I just wanted to stop everything, but couldn't. It was so fast. He was fine, then 3 days later, gone! I am glad he didn't suffer, but just have so many regrets. It hasn't got easier yet. Lets pray a cure or at least a treatment can be found soon so no one ever has to go through this again.
So I am trying a bit of a crazy (and desperate) social-media experiment -- I am trying to make a video about Cory and Duchenne GO…Continue
Added by David Stalling on May 1, 2012 at 1:00am — No Comments