PPMD Community

All Blog Posts Tagged 'PPMD Blog' (806)


Staff
Run For Our Sons – Newsletter/Updates



The past six months have been action-packed for Run For Our Sons, and we wanted to take a moment to share what's happened and what's ahead with the entire Parent Project Muscular Dystrophy community. A big thank you to each and every one of you who have gone the distance to end Duchenne, whether it was a full marathon or a 5K - you're helping us raise funds to support PPMD's…

Continue

Added by Nicole Herring on August 9, 2012 at 8:46pm — No Comments


Staff
Coach to Cure MD: Text, Talk, Tailgate

Football season is one of my favorite times of year. It brings me back to watching my college football team, the James Madison University Dukes, who will always be near and true to my heart. Who doesn't like to tailgate and root on their teams?



On September 29,…

Continue

Added by Danielle Garrigan on August 9, 2012 at 8:00pm — No Comments


Staff
My Voice: Sean Quigg, 18 years old

Creativity, humor, edgy, important – these are just some of the words we can use to describe our Featured Voice for August, Sean Quigg and his Spaghetti Arms project. Sean wanted to raise awareness in a clever way that explained Duchenne, but was also cool. He also wanted an excuse to follow some of his favorite bands. Thus, Spaghetti Arms was born, whose mission is to…

Continue

Added by Will Nolan on August 9, 2012 at 7:26pm — No Comments

Expectations for Clinical Trials

Over the past few years I have talked to a lot of parents, individuals with Duchenne, and clinicians about clinical trials. This probably won’t be a surprise to you: I often hear how desperation and a feeling of running out of time affect how people think and feel about clinical trials.      …

Continue

Added by Holly Peay on August 9, 2012 at 11:47am — No Comments


Staff
Perspective (Two Moms, Co-Blogging)

Parents agonize over clinical trials, balancing the pros and cons and above all else, wanting to do what is best for not just the physical health of their child, but the emotional health as well. In this month’s co-blog, Colorado FACES coordinator and parent Ivy Scherbarth and…

Continue

Added by Pat Furlong on August 9, 2012 at 11:00am — No Comments


Staff
Positive Exposure

Rick Guidotti has a lot of energy - a lot of experience and expertise, but the first thing you notice about him is, he has a LOT of energy. I first heard him speak at Cincinnati Children's Hosptial Medical Center at pediatric grand rounds. He was in Cincinnati to promote his photography installation…

Continue

Added by Kathi Kinnett on August 9, 2012 at 9:00am — No Comments


Staff
Standardizing Duchenne care

 

The clear message received by all at the end of the Transforming Duchenne Care meeting, held just prior to the PPMD Connect Conference, was that parents, providers and…

Continue

Added by Kathi Kinnett on August 8, 2012 at 9:30am — No Comments


Staff
Celebrating Our Olympic Hero

If you asked me if I could swim, I might say ‘more or less’. Translated, that means that somewhere long ago I took some lessons, that are now lost to memory and in some strange way in my ‘muscle memory’ and adapted for the few times I have access to a pool. For some of us, the ‘more or less’ approach is what we do. Paddle around the shallow end, jump or dive…

Continue

Added by Pat Furlong on August 1, 2012 at 9:30am — No Comments


Staff
CALLING ALL CALIFORNIA RESIDENTS!

A team of UCLA scientists, clinicians and clinical trialists led by Drs. Stan Nelson and Carrie Miceli have teamed with AVI and Dr. Craig McDonald to bring a novel combination therapy forward for use in DMD and sent a proposal to the California Institute of Regenerative Medicine (CIRM). It involves the UCLA discovery of an already FDA approved drug to boost exon skipping activity when used in combination with anti-sense oligo-nucleotides for Duchenne. Duchenne patient skin cells…

Continue

Added by Ryan Fischer on July 23, 2012 at 5:00pm — 2 Comments


Staff
Transforming Duchenne Care Summary

"How can parents and patients be assured they are receiving the best care and treatment and what are the components of optimal care?”

 

PPMD gathered clinical providers, hospital administrators, industry, government, and parents together for a 2-day pre-conference meeting in order to address these critical issues. In the United States and around the world, there is considerable variability in care. Parents often feel it is…

Continue

Added by Kathi Kinnett on July 17, 2012 at 3:41pm — 1 Comment


Staff
July Note: The Theater of Duchenne

I think at this point we all get that ending Duchenne is going to take a collaboration of efforts. Treatments will come from different researchers, produced by different pharmaceutical companies, and supported by different foundations. Ending Duchenne will be an ensemble piece, a collection of great…

Continue

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


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…

Continue

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,…

Continue

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…

Continue

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.…

Continue

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…

Continue

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)!…



Continue

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…

Continue

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…

Continue

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

Monthly Archives

2018

2017

2016

2015

2014

2013

2012

2011

2010

2009

2008

2007

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2018   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service