All Blog Posts Tagged 'duchenne' (64)

Reduce the Chances of Duchenne with PGD

As we are well aware of the rare muscle disorder known as Duchenne muscular dystrophy (DMD)  and among the most common genetic conditions impacting roughly 1 out of every 3,500 male births around the world.  From the age of 3-6 years is when it becomes physically evident. DMD symptoms include weakness and muscle atrophy in the pelvic area along with the muscles on the shoulder. While the disease…


Added by Teresa Wasserman on August 20, 2015 at 4:31pm — No Comments

The Duchenne Dash - Andew Elder from Masters cycles to Paris!

Andrew Elder, a Non-Executive Director on Masters Board, will be participating in the Duchenne Dash on 5th June 2015, in aid of The Duchenne Children’s Trust, cycling from London to Paris, a distance of over 200 miles, in 24 hours.

Andrew has been training hard for the event and is keen to raise awareness of this important cause.

Duchenne Muscular Dystrophy is a genetic condition causing muscle weakness.  It starts in childhood and usually affects boys…


Added by Rachel Skinner on June 2, 2015 at 11:03am — No Comments

PPMD Funds Investigator to Build New Muscle from Skin Cells to Treat Duchenne

Parent Project Muscular Dystrophy (PPMD) has awarded University of Minnesota researcher Dr. Rita Perlingeiro a grant for $220,000 to develop a therapeutic approach for Duchenne using a new type of "adult-derived" stem cell called "induced pluripotent stem cells" or "iPSCs." iPSCs can be created from non-controversial sources like skin, have the ability to multiply indefinitely, and can be coaxed to become many different kinds of tissue types.

Previously, Dr.…


Added by PPMD on March 22, 2013 at 10:08am — 1 Comment

Chronicling a Journey

When Chris and Patrick died, there was no Internet, no way to connect. The days just after they died, life was busy but at the same time heartbreaking – there was so little time to think about anything. After all was over, silence settled in. We were left with the burden of living without them, of going on and trying to make some sense of it.

No one called, not…


Added by Pat Furlong on March 12, 2013 at 4:32pm — 3 Comments

Living Duchenne: Let's Talk About Stress, Baby

Guest post by Ivy Scherbarth. Ivy is a Colorado/Wyoming FACES Coordinator for PPMD. Follow Ivy at her blog, Living Duchenne.…


Added by PPMD on March 7, 2013 at 3:30pm — 1 Comment

The MD-CARE Act Reauthorization: Update on Efforts

Updated 3/07/14:  109 total members- New additions in bold below

We continue to make progress on the…


Added by Ryan Fischer on March 5, 2013 at 3:00pm — No Comments

PPMD Funds UCLA Project to Identify Genetic Changes that Affect the Severity of Duchenne

PPMD will provide $100,000 to Dr. Stanley Nelson of the University of California, Los Angeles, to examine the genomes of 40 boys with Duchenne who are either very mildly affected or very severely affected. The goal is to identify changes in genes other than dystrophin that may affect the course of the disease.

"We know that even boys who have exactly the same mutation in the dystrophin…


Added by PPMD on March 5, 2013 at 10:49am — No Comments

Advocates in Muscular Dystrophy Community Press Congress for Fast Action on Muscle Disease Research and Treatment

The Muscular Dystrophy Association, Parent Project Muscular Dystrophy and the Foundation to Eradicate Duchenne have called on the U.S. Senate and the U.S. House of Representatives to reauthorize the MD CARE Act of 2001, and to continue federal support for the accelerated pace of research and treatment development for muscular dystrophy. We are urging the public to contact their U.S. Senators and ask them to vote for reauthorization of …


Added by PPMD on February 19, 2013 at 10:30am — No Comments

Is Your District Represented?

As you know, we head into an important year of Advocacy with the muscular dystrophy community determined to Reauthorize the MD-CARE Act. For the past few months PPMD, FED, and MDA have been working…


Added by Ryan Fischer on January 28, 2013 at 4:30pm — No Comments

Living Duchenne: My Year in Review


Guest post by Ivy Scherbarth. Ivy is a Colorado/Wyoming FACES Coordinator for PPMD. Follow Ivy at her blog, Living Duchenne.

Living Duchenne: My…


Added by PPMD on January 7, 2013 at 10:30am — No Comments

Exon Skipping & Improving Industry Communications

The 194th workshop of the European Neuro Muscular Centre (ENMC) met in Naarden, The Netherlands, December 7-9, 2012. The title of the workshop was, “Towards Clinical Application of Antisense-mediated Exon Skipping for Duchenne Muscular Dystrophy – Opportunities and Challenges.”  25 representatives of…


Added by Kathi Kinnett on December 13, 2012 at 12:30pm — No Comments

The Greatest of These

Photo Credit



Added by Pat Furlong on December 13, 2012 at 10:30am — No Comments

Help us Reauthorize the MD-CARE Act

I am often asked: "How can I help in the fight to end Duchenne?" and "What are things I can do to make a difference?" My answer is always…


Added by Ryan Fischer on December 12, 2012 at 11:31am — 1 Comment

Giving Thanks, Looking Forward

Every Thanksgiving, I find myself with a lot to be thankful for: my family’s love and support, our Duchenne community, and your tireless efforts.

This year is no exception. We’ve accomplished so much together. When I think of all that our community has made possible over the years, all that we’ve done in 2012, and all that we’re doing today, my heart fills with…


Added by Pat Furlong on November 20, 2012 at 2:00pm — 2 Comments

Help Protect Federal Spending on Rare Diseases like Duchenne

PPMD Taking Action to Avert Sequestration

Those engaged in federal advocacy probably thought the Prescription Drug User Fee Act and its acronym PDUFA would take the cake…


Added by Ryan Fischer on November 19, 2012 at 4:57pm — 2 Comments

Representing Duchenne at the Congressional Rare Disease Caucus Briefing

Today, Parent Advocate and Founder of Two Smiles One Hope Foundation, Alison Willis and I represented the Duchenne community at the Congressional Rare Disease Caucus Briefing in Washington, DC. Alison did a remarkable job speaking on behalf of PPMD regarding the Patient Participation in Medical Product Discussions Provision within the newly passed…


Added by Ryan Fischer on November 14, 2012 at 3:00pm — No Comments

What is Duchenne? (Two Moms, Co-Blogging)

Ivy's son, Rain


What IS Duchenne?

by Pat Furlong


Last year, Ivy and I agreed to write a co-blog. I would introduce Ivy’s or wrap something…


Added by Pat Furlong on November 13, 2012 at 8:30am — 2 Comments

Duchenne and the Election

Tomorrow, we will head to the polls to choose who will lead our nation for the next four years.

While many of us – particularly those of you who live in key "swing" states that will likely determine the outcome of the election – may be tired of the unceasing television commercials, robocalls and mailers, it's important to recognize that regardless of who is elected, creating…


Added by Ryan Fischer on November 5, 2012 at 2:30pm — No Comments

3 Easy Ways to Leverage Employee Giving & Make the Most Out of Your Donation

Workplace giving campaigns are convenient and effective ways to raise funds in support of ending Duchenne. And they are underway now!

Let your family, friends, coworkers, and everyone on your email list know that the annual United Way and…


Added by Will Nolan on October 25, 2012 at 9:00am — No Comments

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