January 2013 Blog Posts (19)

Living Duchenne: I Love the Internet

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

Living Duchenne: I Love the Internet 


Dear Internet, how I do love thee!…


Added by PPMD on January 31, 2013 at 8:32pm — 2 Comments

Webinar Q&A: Ventricular assist device (VAD) use in Duchenne

On January 24, PPMD hosted the third in our series of four cardiac webinars. This webinar was dedicated to the subject of Ventricular assist device (VAD) use in patients with Duchenne. We were pleased to be joined by a panel of four outstanding surgeons who are all experts in the field of cardiothoracic surgery.

The four…


Added by Kathi Kinnett on January 30, 2013 at 12:30pm — No Comments

Letting Go and Letting Be

Riley just returned from his church group's winter camp. They got in 8 hours later then they had anticipated but we didn't mind as it was more time Riley got to spend being a normal 12 year old boy. He shared with us pictures and videos of his weekend adventure and my heart about stopped when I saw him racing down a snow covered hill in an inner-tube. I personally want to put all my kids in a bubble so they never suffer a single injury after my 7 year old suffered both a broken leg and elbow…


Added by Nicole France on January 29, 2013 at 1:08pm — 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 together on the legislation and coordinating efforts with our…


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

living with duchenne

Well we made it through 2012 but we had a lot of bumps and bruises on the way through. In january of 2012 jacob was at school and they called me to say he had passed out and wasnt responding. He couldnt walk or talk or anything. When i got there the ambulance was pulling up and we had to go to the hospital.  He was admitted for tests and then the doctor at our nearest hospital wouldnt touch him because of the dmd. They sent us home and before the end of the month he was in the hospital two…


Added by danielle on January 25, 2013 at 7:35pm — No Comments

Pray at all Times

Our five year old son Matthew has just been diagnosed and it still seems unreal, like in any moment I will wake up from a horrible dream.  It definately came as a shock, we really had no clue about this disease, until now.  You go to the doctor and they are supposed to make you better, but being told there is no cure, that is the worst thing a doctor can say.  So who do I turn to?

I was raised going to church, every Saturday.  But these past two years I began to have a resentment with…


Added by JENNIFER SORTO on January 23, 2013 at 6:52pm — No Comments

Open letter to Misty VanderWeele

There are no words that will make sense on a day like today. No matter the context, they will fall empty. Words are unable to grasp the enormity of losing Luke and none big enough to tell the story of his life or of your lives together. From the moment you held him in your arms 21 years ago, full of hopes and dreams for the life he would have, to the day of his…


Added by Pat Furlong on January 21, 2013 at 4:00pm — 6 Comments

Sarepta Summary of Outstanding Questions from PPMD Webinar

On October 23, 2012, PPMD hosted a webinar with Sarepta to discuss of the 48 Week dystrophin and 6-minute walk test (6MWT) data from the Phase IIb extension study in Duchenne as well as next steps for the eteplirsen program. Chris Garabedian, President and CEO of Sarepta…


Added by Sharon Hesterlee on January 17, 2013 at 12:00pm — No Comments

Duchenne is El Salvador

Life in Washington DC sometimes shields you from what's going on with the rest of your family. I had not traveled to my native El Salvador for over 7 years! It was time to go visit my relatives.


This past December I decided to travel to my native El Salvador to visit my grandmother. When I arrived I was told my uncle had fathered a son who was born with Duchenne but the two had separated but now were living together.…


Added by Erick L Marroquin on January 16, 2013 at 4:30pm — No Comments

American Taxpayer Relief Act of 2012

Although it’s a New Year, there is still an opportunity to make a charitable donation for the 2012 tax year. The American Taxpayer Relief Act of 2012 that averted the fiscal cliff and maintains incentives for charitable giving for most Americans affects charitable giving in several ways; some still to be determined and we will keep you apprised of any developments for 2013 giving.

One important piece we need to make you aware of now is the return of the IRA charitable…


Added by Mary G. Connolly on January 16, 2013 at 1:50pm — No Comments

Ventricular Assist Device (VAD) use in patients with Duchenne

End stage dilated cardiomyopathy (DCM) is a known complication of Duchenne muscular dystrophy. DCM leads to end stage heart failure and the premature death of patients with Duchenne. Given recent advances in respiratory care, heart failure is the cause of death in more than 40% of patients with Duchenne.


A “ventricular assist device (VAD)” is a mechanical pump that is connected to the heart in order to support its function. The type of device that would be considered in…


Added by Kathi Kinnett on January 16, 2013 at 1:30pm — No Comments

My Voice: Anthony DeVergillo, 19 years old

When you meet Anthony DeVergillo in person, you can’t help but leave the conversation with a smile on your face. This almost 20-year-old is the definition of optimism. In fact, he has made spreading optimism his life’s work. From an early age, Anthony realized he had two choices with his Duchenne diagnosis – let it defeat him both physically and emotionally, or challenge it…


Added by Will Nolan on January 16, 2013 at 1:00pm — No Comments

Your Go-to Duchenne News Resource

The Duchenne community is bigger than ever and Duchenne news is coming faster and more frequently than we could ever have hoped for. 2013 is already promising to be a big year in research, advocacy, care, and raising awareness. But…this can be overwhelming. With so much information coming your way, with a barrage of messages and posts through social media in your face, it’s hard to know what’s legit, what’s truly promising, and unfortunately, what just isn’t true.…


Added by Will Nolan on January 16, 2013 at 1:00pm — No Comments

We Will Not Be Defeated

I have not traveled the easiest road to say the least; I have found myself penniless, destitute, hurt, and lonely. I have been lied to, cheated on, and belittled. My ability to trust and rely on others has been shaken. These roads sucked and I would not wish my worst enemy to travel a single one. But I have quickly learned these roads do not compare the the road I must now face. I am faced with the possibility I will lose my son to a fatal disease that slowly robs him of ability to…


Added by Nicole France on January 10, 2013 at 9:04pm — 2 Comments

GSK Update

Update from GSK on the progress of their drisapersen (previously GSK2402968) clinical development program:

To keep you current on the progress of the drisapersen (previously GSK2402968) clinical development program, as you have requested, I am writing to inform you that the last patient has been recruited within the drisapersen US Phase II clinical study […


Added by PPMD on January 10, 2013 at 9:00pm — No Comments

Educating healthcare providers about the need for early diagnosis

Families of children with muscular dystrophy and other muscle disorders often experience a diagnostic odyssey that is too long and too emotionally difficult. PPMD, with support from The Centers for Disease Control and Prevention (CDC), created the National Task Force for Early Identification of Childhood Neuromuscular Disorders to address the continued gap between the time when the first symptoms of muscle weakness…


Added by Holly Peay on January 9, 2013 at 2:00pm — 1 Comment

Running for our sons

This is the week I am supposed to rest, relax and store up a bit of glycogen. That formula is in every runner’s training plan along with the advice to load up on carbohydrates and I should follow that advice.  Sunday I run the Disney Marathon along with other families and friends participating in this race as well as the 5K, Half Marathon in Orlando.  Oh yeah, there’ll be…


Added by Brian Denger on January 8, 2013 at 3:00pm — 1 Comment

The Day My World Was Turned Upside Down

I was so full of hope for 2013 after what had been the worst year ever. Until Friday, January 4th when I heard something that would forever change our lives; my 12 year old son had been diagnosed with Duchenne Muscular Dystrophy. When I heard the neurologist give the diagnosis I vaguely understood what he was handing me, a disease that would eventually cripple my son as his muscles slowly weakened. But what I read later absolutely stopped my heart and I thought I was going to die. I…


Added by Nicole France on January 7, 2013 at 12:36pm — 2 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

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