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November 2013 Blog Posts (69)

Getting There Faster

PPMD’s research strategy has long had three distinct facets—to develop treatments Better, Faster, and Now. In the past, I have talked about how we have teamed up with TREAT-NMD to use its panel of experts on Duchenne and drug development to review projects with the goal of putting…

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Added by Sharon Hesterlee on November 26, 2013 at 3:45pm — 4 Comments


Staff
Grateful for you

2013 has been a year of incredibly high highs and incredibly low lows. Sometimes those lows have overshadowed all the highs—and for good reason. It’s impossible to put into words how devastating the setbacks are.



But our community is and has always been stronger than the setbacks. We may be fighting a disease that takes away muscle, but you are the strongest people I’ve ever known. It’s during our biggest challenges that strength matters most, and I know we’ll get through this…

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Added by Pat Furlong on November 26, 2013 at 1:30pm — 5 Comments


Staff
My BRAVE Story: Every day brings challenges

My story begins in 1980 when I became a camp counselor for MDA summer camp. From 1980 to 2012, I watched the campers enjoying being the "norm" for a week. I fell in love with their courage and their joy for life. I watched over the years as the disease ravaged their bodies, but not their spirits. It broke my heart each time we lost a camper.

Fast forward to March 18, 2013 in Guangzhou, China. This was "Gotcha Day" This is the day I met my son, Bobby. He had been diagnosed…

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Added by PPMD on November 25, 2013 at 2:44pm — No Comments


Staff
My BRAVE Story: Like all parents, we long for the day that DMD/BMD is finally eradicated

My son Philip, who will be 39 in 3 months, is in many ways one of the luckier men with a slow-moving but very incapacitating form of Becker MD. Phil has accepted the fact that he is almost totally dependent on his Home Care Aides. Phil has chosen to lived in Nebraska on his own since going to the Univesity of Nebraska in 1994.  Phil was the impetus for my Doctoral Dissertation at Ohio University in 2002. I interviewed families throughout the US to compare the incidence of DMD/BMD…

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Added by PPMD on November 25, 2013 at 2:40pm — No Comments


Staff
My BRAVE Story: We are fighting every day, every hour, every minute, and every secon

Our battle with Duchenne began in November 2010 when our son, Isaac, just 13 months old at the time was diagnosed with this disease.  Our family to that point has never even heard of Duchenne, nor had anyone in our family ever been diagnosed with any type of Muscular Dystrophy.  On that day we also learned that there were no treatments available to treat the actual disease, only to treat symptoms of the disease.  Then the doctor gave us the most life changing information, Duchenne…

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Added by PPMD on November 25, 2013 at 2:30pm — No Comments


Staff
My BRAVE Story: For me, for my son, the time is now

As a parent, I think it was the hardest question I've had to answer (yet): "Will I never be able to get up on a stool again without help?" Automatically my rehearsed optimism kicked into gear. "We hope that's not the case. We hope that all the doctors working on new medicines will find a cure."    

My son was 3 years old when he was diagnosed with Duchenne muscular dystrophy. But, we dared to believe, this was a new era for the disease. Medical science had had so many…

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Added by PPMD on November 25, 2013 at 2:24pm — No Comments


Staff
My BRAVE Story: I will knock down every door

I want the FDA to know that when Duchenne enters your life, there is no "son, you can grow up and be anything you want to be" discussion anymore.  I want them to know that it changes everything about parenting you ever thought you knew to be true.  Before Duchenne, I pushed my children to do their best at school, and set goals for themselves.  Give 100%, isn't that what we're supposed to do?  But just how important is education for a child that may not live long enough to utilize…

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Added by PPMD on November 25, 2013 at 2:14pm — No Comments


Staff
My BRAVE Story: I will always feel what if for the rest of my days

I'm unsure whether I should share my story but feel I must, we lost our most precious boy Matthew (I miss saying his name so much) we lost him 2 years & 3 months ago he was 19. We cared for him so carefully and would not let the wind blow on him. His care under the transitional care team was not what we expected to say the least. At times I was shocked as too what I was not not told to expect, for example referring through my go for any concerns regarding Matthews care.  We…

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Added by PPMD on November 25, 2013 at 2:10pm — No Comments


Staff
My BRAVE Story: He's afraid he won't wake up the next morning

Exactly 20 years ago today on November 7, 1993, we received our only child and son, Matthew's diagnosis of Duchenne Muscular Dystrophy. I cannot describe how our hearts ached except to say that is felt like a huge hole in our hearts. Our son was almost 5 yrs. old and we felt like he had or part of him had died. All of our hopes and dreams for his life were torn apart.

We've lived with a dark cloud following over us for 20 years, not knowing when he would take his last…

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Added by PPMD on November 25, 2013 at 2:07pm — No Comments


Staff
My BRAVE Story: I have a 32yr old grandson

I have a 32yr old grandson, Jeff was doing well until about a year ago when he began experiencing pain in his right hip and knee, we have tried everything in the way of positioning and sitting to help and have tried several different medicines and treatments, even acupuncture to no avail. 

I would like to know if there are any studies going on to help these young men that are aging out with Duchene, but are suffering pain in their bodies. 

My concern now is that the…

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Added by PPMD on November 25, 2013 at 2:00pm — No Comments


Staff
My BRAVE Story: I have two sons with Duchenne

I have two sons with Duchenne. They are both students at MSU. My oldest son will get his master's in Molecular Cell Biology in the spring. They both struggle every day just to live. They are unable to care for themselves, so they must depend on someone to care for most of their needs. They are both extremely smart and have worked really hard to stay alive. The new medicine could enable them to live by themselves and have  lives of independence. Needing help means they depend on…

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Added by PPMD on November 25, 2013 at 2:00pm — No Comments


Staff
My BRAVE Story: I can't even explain the sadness that I have experienced in the past and the present

Hello: My name is David Listerman and I am the proud father of Gunnar Listerman. Gunnar was born on November 22 1991 in which that was the happiest day of my life. On Dec 18th 1994 when he was diagnosed with Duchenne MD that was the second worst day in my life. Having the honor to have Gunnar in my life and as he grew older having to be asked 'Dad am I going to die?" or "dad do you think they will find a cure soon enough?" and trying so hard to remain positive while inside the…

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Added by PPMD on November 25, 2013 at 1:53pm — No Comments


Staff
My BRAVE Story: Our son was only diagnosed one month ago

Our son was only diagnosed one month ago. He will be six years old in January. Already our lives have been drastically altered. There is so much to think about and worry about now. Drug treatments, physical and other therapies, school issues, social issues, self esteem, financial strain, stress, worry...this is just the beginning of what we are up against. Today our son can walk, run and climb stairs, but some days he is so tired and we see him lagging behind his friends in height…

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Added by PPMD on November 25, 2013 at 1:51pm — No Comments


Staff
My BRAVE Story: Let us determine what is best for our families

My story starts 42 years ago, when my brother was diagnosed with DMD, I was a very young girl at the time, but he was my big brother that I loved more than life itself. So smart, so kind hearted, and so gentle a soul. My parents did everything they could to extend his life, and they were successful, he made it to 27 years old...which was unheard of at that time. The final autopsy revealed that the arteries to his heart were frayed. Those words resonate in my head for life. He was…

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Added by PPMD on November 25, 2013 at 1:30pm — No Comments


Staff
My BRAVE Story: We are waiting for a miracle

Dear Sir, ,  My son Aeden is five years old...he is a beautiful child,funny,and full of life. Unfortunatly he had be effected by  this horrible disease.  He was diagnosed with DMD almost 3 years ago.  He has the mutation of exon 51.  Aeden cannot run or jump and often is lying on the floor playing because he becomes tierd.  He climbs into his bed by flopping his chest onto it and then struggles to pull himself onto it completely.  Although Aeden knows how to dress himself, I often…

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Added by PPMD on November 25, 2013 at 12:49pm — No Comments


Staff
My BRAVE Story: Help my son!

Help my son!!!! He is only 11 and wants to be a policeman. He wants to save us from bad people and drive a car. Help him obtain his dream --- by pushing the FDA to allow exxon skipping approval. We need help and TIME IS not on our side... we need each of you to believe that these children our your sons, your grandsons -- what would you do to help them! Please allow us to talk about their dreams -- to allow them to have goals and experience life! We are asking for your help --…

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Added by PPMD on November 25, 2013 at 12:30pm — No Comments


Staff
My BRAVE Story: This disease follows a very predictable course

Greetings,  We are the parents of a child with Duchenne Muscular Dystrophy. His name is Samuel, and he's 8 years old. We're guessing that after hearing/reading previous stories, you're familiar with the devastating implications of this disease. Just how devastating it is can only be fully understood by the families of a child who has it. But we're going to try to explain what it means to us.  The word 'devastate', according to Merriam-Webster, means 'to destroy much or most of…

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Added by PPMD on November 25, 2013 at 12:30pm — No Comments


Staff
My BRAVE Story: Our whole life changed instantly

My son Ben, who is now 27 years old, has Duchenne Muscular Dystrophy.  He was diagnosed at age 9 and went into a motorized wheelchair at age 13.  We started him on prednisone after diagnosis, took him off because he sustained a 50% compression fracture of L5 from a fall and because of the steroid.  He was off steroids for 2 years and then we started them again and he still remains on it, although at a subtherapeutic dose.  He requires our full time attention and care and is very…

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Added by PPMD on November 25, 2013 at 12:18pm — No Comments


Staff
My BRAVE Story: Shouldn't every child have the right to treatment?

My 5 year old Grandson Addison was diagnosed with Duchenne at 2 years old. His Duchenne is progressing faster than we had hoped & being on Medicade he does not qualify for any test treatments that may slow down the progression. I dont think its fair that any potential treatment can be denied a child just because he is on assistance. shouldnt every child have the right to treatment? You be the one to tell him he can not be helped because of "red tape"! He is a wonderful boy…

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Added by PPMD on November 25, 2013 at 12:14pm — No Comments


Staff
My BRAVE Story: Will he ever get the chance to even grow up

My son just turned 5 . All he talks about is when he grows up .He wants to drive, be as big as his big brother ,he wants to play sports . Often I wonder will he ever get the chance to even grow up.. It saddens us to see our Angel fall all the time his poor knees are always black and blue . As we watch him try to play on the playground at his(he is in 4k )school he isn't able to swing on there swings barley can climb up the stairs to slide and has an aide who stays with him at…

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Added by PPMD on November 25, 2013 at 12:10pm — No Comments

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