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All Blog Posts Tagged 'PPMD Blog' (792)

Increasing stem cell survival in Duchenne therapy

One approach to improving muscle strength in Duchenne is to replace unhealthy muscle cells that lack dystrophin with donor stem cells that have normal levels of dystrophin. These cells might come from a relative unaffected by Duchenne or even a person with Duchenne’s own cell, after dystrophin is restored…

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Added by Sharon Hesterlee on August 29, 2012 at 2:00pm — 6 Comments


Staff
Scott’s 46th Birthday

First, my disclaimer. I’ve known Scott and the Sands family for more than 20 years. I met Scott’s father during my travels long ago, both of us looking for magic for our sons. I knew well the story of Scott’s family traveling to Florida when he was 23, the emergency tracheostomy,…

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Added by Pat Furlong on August 15, 2012 at 8:00am — No Comments

Summer vacations

Brian Denger is the father of two sons who are living with Duchenne. He is very involved with PPMD in the effort to educate and help families living with Duchenne.

Vacations and summer are synonymous for many families. When people think of vacations,…

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Added by Brian Denger on August 14, 2012 at 9:00pm — No Comments


Staff
August Note: Going for the Gold

As you read this month's newsletter, the 2012 Summer Olympics in London are coming to a close. The world’s best athletes are heading home with their medals or their hearts broken, but all of them taking with…

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Added by Pat Furlong on August 13, 2012 at 6:00am — 1 Comment


Staff
Senate and House Continue to Send Message Against CDC Consolidation

Thank you to everyone who reached out to their Senate and House members about stopping consolidation of vital Duchenne programs at the CDC! Members of both the…

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Added by Ryan Fischer on August 9, 2012 at 10:09pm — 2 Comments


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…

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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,…

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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…

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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.      …

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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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

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