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All Blog Posts Tagged 'PPMD Blog' (754)


Staff
My Voice: Jack and Nolan Willis, 10 years old

The clinical trial process is complicated and confusing. At this year’s Annual Connect Conference, PPMD wanted to shed light on what the experience was like for parents, clinicians, industry, and most…

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Added by Will Nolan on July 17, 2012 at 3:30pm — No Comments


Staff
Renaissance Thinking (Two Moms, Co-Blogging)

The Theater of Duchenne

At PPMD's Annual Connect Conference last month, Pat Furlong shared her essay,…

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Added by Pat Furlong on July 17, 2012 at 3:30pm — No Comments


Staff
Highlights from PPMD’s Annual Connect Conference

This year’s Annual Connect Conference in Ft. Lauderdale was incredibly informative, comprehensive, and included the leaders of the Duchenne fight. In the coming weeks, we will be…

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Added by Will Nolan on July 17, 2012 at 2:59pm — No Comments


Staff
Luca Buccella - PPMD Conference

One of the highlights of this year's Annual Connect Conference was 21-year-old Luca Buccella’s moving speech at the closing night dinner on Saturday. Son of Filippo Buccella, the President of Parent Project Italy and a friend of PPMD’s for years, Luca inspired us and made us laugh.…

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Added by PPMD on July 17, 2012 at 2:00pm — No Comments


Staff
Landmark FDA legislation becomes law

Major win for the Duchenne community

PPMD applauds the President for signing into law the Prescription Drug User Fee Act also known as The Food and Drug Administration Safety and Innovation Act. Most recently, PPMD worked with the Everylife Foundation for Rare Diseases and Genetic Alliance to organize…

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Added by Ryan Fischer on July 9, 2012 at 6:00pm — No Comments


Staff
Action Alert! Contact your Senators to help save vital Duchenne programs at the CDC

We need your voice to help save critical Duchenne related programs at the Center for Disease Control (CDC)!…



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Added by Ryan Fischer on July 9, 2012 at 12:00pm — No Comments


Staff
2012 Connect Conference

Guest blog by Jill Anne Castle, mother of two boys, Oliver, 10 & Anthony, 12 (living with Duchenne). Jill works for the Arizona Department of Education in the exceptional student services division as a parents advocate and is the PPMD…

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Added by PPMD on July 3, 2012 at 12:30pm — No Comments


Staff
PPMD to Host First Transforming Duchenne Care Meeting

PPMD is pleased to host the first Transforming Duchenne Care Meeting, June 27-28, 2012, immediately preceding the Annual Connect Conference in Fort Lauderdale. The goal of the…

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Added by Will Nolan on June 25, 2012 at 10:00am — No Comments


Staff
Results from 2012 Advocacy Efforts- Success on Senate Appropriations!

Last week, the Senate Appropriations Committee approved its version of the bill that would fund many key agencies, including the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC), in FY 2013.  Thanks to the hard work of PPMD advocates, the bill reflects a number of our priorities.

 

At the CDC, Senators strongly objected to the administration’s proposal to consolidate the many programs within the National Center on Birth Defects…

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Added by Ryan Fischer on June 22, 2012 at 1:14pm — 1 Comment


Staff
AVI BioPharma and PPMD team up to run the Rock 'n' Roll Seattle Marathon

Run For Our Sons (PPMD's endurance program) is teaming up with AVI BioPharma in Saturday's…

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Added by Nicole Herring on June 20, 2012 at 4:00pm — No Comments


Staff
My Voice: Elizabeth Heller, 25 years old

Elizabeth Heller, is a woman living a full life – student, activist, wife – and does it all, living with Duchenne. Considered to be a disorder that predominantly affects males, Elizabeth is an exception. Each year, Elizabeth joins…

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Added by Will Nolan on June 14, 2012 at 11:00pm — 2 Comments


Staff
June Note: Time to Connect

It’s the official start of summer. And for our community, it’s that time of year when we come together with caregivers, scientists, and industry for PPMD’s Annual Connect Conference. This year’s agenda is quite astonishing, reflecting the vast number of therapies in the works, the updates to care, our increased presence in Congress, and a panel series that will dissect the clinical…

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Added by Pat Furlong on June 14, 2012 at 11:00pm — No Comments


Staff
Measuring Up (Two Moms, Co-Blogging)

We all feel like we are being held up to some predetermined standard – whether it is at our job, in school, or just walking down the street. In Duchenne, we compare our sons to other people’s sons, to others with Duchenne. But who is to say what is right or normal? In their monthly co-blog, PPMD President Pat Furlong and Colorado FACES coordinator, Ivy…

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Added by Pat Furlong on June 14, 2012 at 10:30pm — 1 Comment


Staff
PDUFA Sails Through House of Representatives

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.…



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Added by Ryan Fischer on May 31, 2012 at 10:30pm — No Comments


Staff
PPMD endorses Senate version of Prescription Drug User Fee Act (PDUFA) after patient voice strengthened

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…

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Added by PPMD on May 24, 2012 at 3:00pm — 1 Comment


Staff
PDUFA Moves Closer to Passage

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…

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Added by Ryan Fischer on May 17, 2012 at 10:28am — No Comments


Staff
Connect with us!

Register for the 2012 Annual Connect Conference

The clock is ticking and the 
Annual Connect Conference in Ft. Lauderdale, FL,
 June 28 - July 1, 2012 will be here before you know. Register today…

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Added by PPMD on May 17, 2012 at 9:30am — No Comments


Staff
My Voice: Cory Stalling, 11 years old

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…

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Added by Will Nolan on May 7, 2012 at 2:00pm — 1 Comment


Staff
Priorities (Two Moms, Co-Blogging)

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…

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Added by Pat Furlong on May 6, 2012 at 11:18pm — 1 Comment


Staff
Results from DuchenneConnect Study - PPMD Webinar Follow up

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!…

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Added by Ann Martin on May 2, 2012 at 12:00pm — No Comments

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