November 2013 Blog Posts (69)


Staff
My BRAVE Story: All children are valuable and should be treated as precious

It was determined that my son Cody had Duchenne at the age of 3.  He is now 12.  He is 5'5" tall and weights a whopping 68 lbs.  He eats the same as I do but this terrible illness is just eating away his muscles.  He can no longer walk, care for himself, he struggles to speak, and to straighten out his legs or raised his arms over his head.  EMS has been to our house twice in the past year because he has choked on his food and did not have the strength to cough it up on his own.…

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Added by PPMD on November 20, 2013 at 11:41am — No Comments


Staff
My BRAVE Story: It rules every aspect of our lives

DMD has stolen my son's ability to live his life with dignity, opportunity, and freedom--all the reasons we came to this country to have children. It rules every aspect of our lives, all in the family are constantly being punished by the effects of this killer disease.

There is no excuse for not spending the monies, giving quicker FDA approval for drugs that work. Every day you procrastinate in your decisions; is a day that has been unashamedly stolen from my son's life, my…

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Added by PPMD on November 20, 2013 at 11:30am — No Comments


Staff
My BRAVE Story: Time is something our boys do not have

I recently attended the Advocacy conference in Washington DC and for the first time since my son has been diagnosed I have hope. I sat with a family that has experienced the benefits of Etepliersen. We are so close to a cure! I would do whatever possible to have my son be involved in a clinical trial to help him and others. The science is so promising. All of us as parents know what the outcome is if we don't try something.

I beg you to fast track drugs and treatments…

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Added by PPMD on November 20, 2013 at 11:30am — No Comments


Staff
My BRAVE Story: We must expedite the process

My son is 12 years old now, thirteen in July of 2013. I would like to say I am excited to see Cory becoming a teenager but I only watch each passing year with a mixture of joy and dread. Joy that my son is still fully mobile on his own and has very little need for a wheelchair; joy that he is a happy and relatively healthy young man despite his diagnosis; dread that the older he becomes the greater the likelihood he will no longer be the independent young man he is…

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Added by PPMD on November 20, 2013 at 11:14am — No Comments


Staff
My BRAVE Story: We have nothing to lose

I'm a mother with two sons who both have Duchenne. Any treatment that has great effects than side effects should be on the market for my children. I can not speak for all parents but for me I pray for anything that will help my sons.Let us pick and choose we have nothing to lose.

Added by PPMD on November 20, 2013 at 11:10am — No Comments


Staff
My BRAVE Story: I think about a cure being found everyday

Our youngest son, Matthew, was diagnosed with DMD at age 2.5, we had never heard of DMD before & after researching it, we were devastated. It is hard to watch the child you love lose the ability to do things he could do last year, last month, yesterday. He is 12.5 now & continues to get weaker. It breaks my heart to see him struggle to hold his iPad or the TV remote, items we can lift & use without even thinking about it.

I think about a cure being found…

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Added by PPMD on November 20, 2013 at 11:07am — No Comments


Staff
My BRAVE Story: Risks are acceptable

In some cases, risks are acceptable to parents and to the patient

Added by PPMD on November 20, 2013 at 11:03am — No Comments


Staff
My BRAVE Story: The FDA should allow these treatments since we know the outcome of this illness

My son turns 21 this year and I want to do everything possible to keep his strength and in good health. There are a number of drugs currently being used of other illness (cancer) and I believe and hope the FDA should allow these treatments since we know the outcome of this illness. Please allow off label use of these drugs.

Added by PPMD on November 20, 2013 at 10:46am — No Comments


Staff
My BRAVE Story: Our lives have changed dramatically and our family will never be the same

My son, Owen, was diagnosed with DMD in July of 2012 - 3 weeks from his 3rd birthday.

Owen is a fraternal twin with his sister Grace and has an older brother who is 6. We thought Owen had flat feet and started with a orthopedic doctor, who told us she thought it was neurological. Owen had trouble running and going up stairs. He walked late but so did his twin sister. We saw a neurologist, had CK test done and in 2 days we received the devastating news of DMD.

Our…

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Added by PPMD on November 20, 2013 at 9:46am — No Comments


Staff
My BRAVE Story: Save the lives of our children

Hi my name is Juan Banuelos

My son is 7 years old and was diagnosed with Duchenne on 8-20-12 he has a mutation in exon 31 and it seems like he is not in the hot spot of mutated exons. And drug companies are only looking at the most common and are putting them in clinical trials which has had a lot of success and I feel hopeless in that sense the technology is out there so please put the rare exons also. On 8-20-12 I felt like I was gutted and empty my whole life change in a…

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Added by PPMD on November 20, 2013 at 9:30am — No Comments

My BRAVE Story: Hunter

I tried earlier today to add My Brave Story for Hunter but I don't know if it was added or not so here is a copy on my personal blog too. Warning it's long but Hunter's story is little complicated:

My beautiful son, Hunter, was born on December 6, 2005. He had the biggest blue eyes and still does, whenever he lays those baby blues on you, I cannot help but hope and hope that somehow someway a miracle is going to happen.



Maybe our miracle has already come and…

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Added by Traci Canipe on November 20, 2013 at 12:00am — 1 Comment


Staff
My BRAVE Story: There Is Still Hope

Our Life With A Rare Disease Called Duchenne -  Submitted by Christine Piacentino My life with Duchenne Muscular Dystrophy started on December 31, 1997.

Today my son Jonathan is 19. On the day of his diagnosis, he was 4 years old. The doctor explained the prognosis. My son could lose the ability to walk by the age of 12, the ability to breath could be lost by 15 and my son might pass away by his mid 20s. The doctor next said that there is still hope. There could be…

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Added by PPMD on November 19, 2013 at 3:47pm — No Comments


Staff
My BRAVE Story: Relax the Requirements for Trials

My son, Kyle, is 17 years old. He has not walked since he was 12 and does not remember ever walking. Kyle is an honors student in high school, marches (in a wheelchair pushed by another student) in marching band, plays in the top band at his school, was selected by our Mayor as one of the top 100 teens in the City, and plans to attend Texas A&M University. He wants to major in engineering, as he has a very analytical mind.

Kyle is a blessing and inspiration to all who…

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Added by PPMD on November 19, 2013 at 3:29pm — No Comments

scoliosis surgery

My son Brian (13 years old) and I visited the clinic today and a lot are being discuss about my son's health now and future with many doctors. There is one thing that we have to make a decision on, which is the scoliosis surgery. I am afraid of what happens next. My son's spine has a 30 degree curvature and his pulmonary is great condition. It is a good time to get it done before it gets worst. Your thoughts, whether you or your son have the surgery or not, will give me more resources to…

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Added by Tang Thao on November 18, 2013 at 10:16pm — No Comments


Staff
My Voice: Ansel Lurio, 29 years old

In a few weeks, PPMD will be hosting a Policy Forum on clinical trials of experiment agents This is a landmark meeting that will include participation from the FDA. It will also include Ansel Lurio, our Featured Voice for November. Ansel is a 29-year-old with Duchenne and has…

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Added by Will Nolan on November 15, 2013 at 10:00am — No Comments

Tired

I am tired of it.

This life, this day.

Fess up ? Shut up.

Fed up ? Throw up.

Projectile puke this weariness

From my core.

Limbs leaden, mind is mud

Yet sleep still exhaustingly illusive.

Eyes involuntarily fluttering

Like a butterfly in a fan.

Sounds never sensed, auditory…

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Added by Andrea Cleary on November 14, 2013 at 4:22pm — 2 Comments

What do you think about clinical trials?

Though clinical trials aren’t for everyone, each trial helps move us toward better treatments.  What do you think about clinical trials?  Share your thoughts, so PPMD can give the best advice to professionals running trials.

At the recent World Muscle Society and Child Neurology Society meetings, we heard reports from…

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Added by Holly Peay on November 13, 2013 at 1:04pm — No Comments


Staff
Time to Unite & Rally

Yesterday was a disappointing day for all parents, grandparents, aunts, uncles, and others touched by Duchenne. Like most of our community, I awoke to the news that multiple factors have led Sarepta to announce that it would delay the filing of its much-anticipated…

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Added by Pat Furlong on November 13, 2013 at 12:30pm — 7 Comments


Staff
Facing Disappointment from FDA's Eteplirsen Response

By now many of you may have heard the news that the FDA has called the new drug application for the exon 51 skipping drug eteplirsen premature.  They have requested instead that a larger phase III study be conducted before they will consider the application for approval.  PPMD, which provided travel support to families who…

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Added by PPMD on November 12, 2013 at 2:00pm — 1 Comment

Christopher out of the hospital

Christopher spent a week at Johns Hopkins Hospital this past week. He has Congestive Heart Failure. I thought we were going to lose him but with prayers from family and friends, he pulled through. He is home and yesterday we had a birthday party at the Crackpot Restaurant in Towson. Christopher had his usual crabcakes. He looked good considering all that he has been through. Keep C. in your prayers.

Added by Chris's Mom..Chris Wade McClusky on November 11, 2013 at 10:23am — No Comments

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