Hello,

I am new to this blog.  My name is Andrew Peckham.  I am 24 years old and graduated with a BS in American History from Salve Regina University 2 years ago.  I live with DMD daily and my brother also has DMD.  He is turning 10 this year.  It is a daily struggle to deal with the ramifications of DMD and watching my brother try to adjust in his…

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Well, it looks like the budget that was proposed today won't go through, and instead we'll go to the polls.  The highlights most of the news stations carried did not have a lot of detail, but there were a few things of interest to our community, and one pretty big one.

 

• This 15-per-cent non-refundable credit on an amount of $2,000 will provide tax relief for caregivers of all types of infirm dependent relatives, including, for the first…

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Had I heeded the advice of my parents there are many classes I might have been better served paying more attention to in school. Academics aside, I never realized a song from a fourth grade gym class was important, but it does hold a bit of wisdom for me today. That song is the “Hokey Pokey” and I won’t subject you to a recital, but the repetitive nature of putting your foot and arm in and out and shaking things about led to the line “that’s what it’s all…

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I met Isa and Doru Tudorache several years ago when their son Peter was diagnosed with Duchenne. Isa and Doru were given the ‘no hope and no help’ diagnosis. Isa asked what she could do and as sometimes happens, the stars lined up exactly right. The Duchenne Parent Project (Italy) meeting was just a few weeks away. I introduced Isa and Doru to Filippo, and met them in…

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Last year, Dr. Lawrence Sturman – Director of the Wadsworth Center, New York State Department of Health – decided it was time to organize a meeting focused on Genetic Diseases of Children. He gathered leaders in the field of rare disease (because many rare conditions are diagnosed in childhood) such as Robert Desnick (Dean for Genetics and Genomic Services, Mt. Sinai School of Medicine), Sharon Terry (Genetic Alliance), and Maggie Hoffman (Co-Founder and Director of Project DOCC). For the next… Continue

If you saw yesterday’s news about Summit’s – a UK drug company – findings, you may have some questions about what this means and is next. This report refers to Summit’s compound that the pharmaceutical company Biomarin had in trial.  The compound failed and Biomarin stopped the trial and made the decision not to go forward.   The compound, which is a small molecule, SMT C1100 (orally available) and…

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I just found yesterday, that most of the big car companies have reimbursement programs for some mobility aids on our vehicles.  Our boys are still pretty young so we're not looking at wheel chair lifts just yet, but we did pick up a 2010 Grand Caravan a few months ago and had planned on putting running boards on anyways, and now it looks like they'll be covered.

The plan with Chrysler varies a bit from the US to Canada, but here's what I found out this morning.  Chrysler will…

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9 months ago I learned a new word - Duchenne. Since then I have learned many new words, and I am starting to become an expert in a disease, I didn't know existed until this very day.

 

My son is 4½ years old, and we started to see doctors when he was about 1½ year, because he walked on his toes. We have seen several doctors, but no-one suspected anything serious. Then just by coincidence i read about duchenne - in an old magazine in a waiting room. I read about two brothers…

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My son has opened the doors to a lifetime commitment of research and learning in nutrition and natural therapies to find a cure for his dis-ease. I feel compelled to share with another family the equipment, tools and knowledge I have and my ranch home here in the healing environment of the Sierras. We were on a roll and ready to purchase a few more pieces of equipment and my…

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On Feb. 19, 2011 we welcomed our beautiful baby, Carter Bennett Staffenhagen.  He was 2 weeks early, but weighed 8 lbs 14 oz, and was 21 inches long.  He's amazing.  We are so lucky to have this baby.  PGD/IVF is a hard long process, but every time I look at him, I wouldn't change a thing.  The two infant pictures on our page are of baby Carter.