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February 2010 Blog Posts (15)

Fitting it all in.



Parents are busy people. It's no wonder. Once we have children they become more than

our "little darlings", they literally become the center of our

universe. When we're younger we think we have a lot to do and convince

ourselves that we are busy, yet I'd like to have some of that time today. As

our children become older we juggle their activities and doctor's…
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Added by Brian Denger on February 27, 2010 at 9:13pm — 2 Comments

Thanks!

Keep them coming - I am thrilled to have so much interest in the next JettRide!!!


The first JettRide in 2007 was truly a labor of love. My daughter Jordan did the entire ride, 3,800 miles in 9 weeks, at the ripe old age of 14 and "NO", she was not an athlete of any sort. She had never ridden a bike before that! I really didn't think she could do it - I learned that our kids, our "normal" kids, really have so much to offer when given the chance. They want to help,…
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Added by Christine McSherry on February 24, 2010 at 4:44pm — 1 Comment

I need some advice/assistance with my situation if possible!!!

I am facing a situation and I am not sure which way to go. After ten yrs at my job I was layed off Nov. 09. with this I also lost my health insurance. My son currently has medicaid but will definately be denied after 04-10. I have since found and re-established myself at a new job but wont have insurance for him and make too much to keep him on medicaid. I feel so helpless although he follows with the neurologist he is not on meds or therpay. PT alone was costing me 400 wk. I have a family of… Continue

Added by Phyllis on February 23, 2010 at 10:29pm — 1 Comment

Wyatt turns 2.

I had a great day with my sweet Wyatt. Today he turned 2. We just spent time together. We didn't go anywhere fancy or do anything spectacular, we just "talked". I love listening to him say new words and try new things. We did get some very special Mommy, Daddy and Wyatt time at a local resturant, without his siblings. They brought him balloons (his new favorite word) and sang the goofy birthday song. The ice cream sundae was as big as his head. Thanks Wyatt for an amazing day, I love you!

Added by Wyatt's Mommy, Melissa on February 23, 2010 at 1:07am — 1 Comment

2010 Climb to Cure Duchenne

I don't know if any of you have heard of this but I thought I would pass on... CureDuchenne (website: cureduchenne.org) is having an annual 2010 Climb to Cure Duchenne, Pick your Peak on June 19th and 20th.

I know that many of you will not be able to participate due to various reasons. And I know many of you may be particularily fond of just supporting PPMD, however our money all goes to the same place, right? To cure…

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Added by Cori on February 21, 2010 at 3:30pm — 6 Comments

Genetic Mosaicism

So I don't know where to post this, so I am hoping if I post it here many people will see it...

Okay so our son Trey has a deletion of Exon 52 which we found out about while I was pregnant with our daughter. After having our daughter I was genetically tested and found to not be a carrier, but the genetisist did say that there is a small possibilty of Genetic Mosaicism.

Now 4 months after having our Daughter I get a call from my OB doctor stating that she is…

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Added by Cori on February 21, 2010 at 2:46am — 8 Comments

emotions

I sat writing today hardly aware of the time and what day it was. My mind I noticed had been slipping lately. Important crucial duties that were required of me I fumbled through. Tears seem to flow more freely even though I deny there existence. Stopping for a brief moment a small voice somewhere from with in me seemed to make logical sense.



As I watched the decline of my Cody's Strength I to was losing parts of me. While this disease was taking from Cody I too struggled to hang on… Continue

Added by Rita Felling on February 17, 2010 at 8:00pm — 4 Comments

Talkin' 'bout my generation

In the early 1970’s the rock band The Who wrote a song called “My Generation”. The song was a tongue in cheek jab at the communication gap between the younger generation and their parents. It became an anthem for many dissatisfied with the lack of understanding between generations.



This communication gap remains today despite every new form of communication that exists today. How many times when telling a friend or family member that our son or grandson has Duchenne Muscular… Continue

Added by Brian Denger on February 11, 2010 at 2:07pm — 13 Comments

The process of approving a new drug

Making a Drug

By Sharon Hesterlee, Ph.D., Sr Director Research and Advocacy

February 8,…

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Added by Sharon Hesterlee on February 9, 2010 at 7:30pm — 9 Comments


Staff
The "Female" Side of Duchenne

It was a long time ago that I sat in the exam room and received the diagnosis. My boys had Duchenne. The diagnosis was followed by a series of questions about my family history, the doctor assuming that somewhere along the line, there was another boy long ago. In my case, there was no history. None. I asked every living member of my mother’s family what they knew, if there was someone who had an unnamed ‘problem’, someone who was weak, or a child who died young from an unnamed illness. One of… Continue

Added by Pat Furlong on February 5, 2010 at 11:30am — 14 Comments

Message from Dr. Brian - Harvard Forum

"Hello Families!


Thanks for coming to yesterdays forum on DMD -…
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Added by Christine McSherry on February 5, 2010 at 10:00am — No Comments

Invite to Harvard Medical Student Forum - Update

Harvard Medical Student Forum Update;





About six families affected by B/DMD attended yesterday's informal meeting with Harvard medical students; Living with Chronic Conditions. There was a broad age range of boys/young men represented, from 2 years old all the way to 46 years old!!…



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Added by Christine McSherry on February 5, 2010 at 8:34am — No Comments

Leg Braces

Hi,

My son is 5 and just got fitted for night braces. I wanted to know how other boys dealt with them and did anyone see a big change? I did not know they were going to go all the way up his thigh. I thought they were only going to go up to his knee. Not sure if I am happy or sad about the change. We will do whatever it takes to help him. I think it hurts us more than it hurts him. So glad I found PPMD. Thank you ALL for your blogs and posts.

SINDY

Added by Sindy Boldizar on February 3, 2010 at 8:35pm — 6 Comments

A Harder Level = a Harder fight from me.

So, when I stopped walking several years ago, I thought my world was over. The planet is not made for someone sitting down. I mentally crashed, and found a counselor who had experience dealing with adults with chronic physical illness...in my case, this was Becker MD. He did offer me strength and perspective, but one of the funny things (and if you are reading this and you know me...then....) at a session was when he compared chronic illness to someone standing on a stairway and looking down.… Continue

Added by Pat Moeschen on February 2, 2010 at 5:52pm — 5 Comments

Harvard Invite from Dr. Brian Tseng

How do we influence medical students to consider taking on muscular dystrophy as a doctor - or at least understand the way it affects families and the impact it has medically/emotionally/socially on the young people it affects - get them (medical students) when they're young and on a very interpersonal level.



Last year a group of parents and young men affected by Duchenne muscular dystrophy, attended a luncheon sponsored by medical students, at Harvard Medical School - it went so… Continue

Added by Christine McSherry on February 1, 2010 at 12:30pm — 1 Comment

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