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August 2010 Blog Posts (17)

Back to School 2010

As I sit here thinking about my 16th year of teaching (which begins tomorrow..Sept. 1), I am thankful for all the support from my middle school colleagues and kids. This summer has been wonderful and scary all at the same time. The Denver conference was amazing, and after it was over, I got speaking gigs at Acceleron (brilliant people work there, and work hard for all DMD boys), and also at the 2nd annual Becker Conference at Mass. General Hospital. I spent time with friends at my lake, as well… Continue

Added by Pat Moeschen on August 31, 2010 at 5:03pm — 3 Comments

The Will to live-part 1

The Will to Live...or die.

While answering one of Oprah's Facebook questions, I ran into a sister of a boy who had duchenne and she told me her brother died at 17 & at home because he was always in so much pain that nothing matter but death.



I had wondered how could there be so many boys out there with Duchenne musuclar dystrophy who suffer greatly that they think the only cure there is to the pain is death. Yet, there are so many young boys and men who just…

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Added by Dee on August 30, 2010 at 6:24pm — No Comments

Standing on my head with my pants torn!

This past month was a series of ups and downs. At the end of July PTC released an update on the Ataluren Data at International Congress of Neuromuscular Diseases. The information was similar to that released before. The low dose study showed benefit versus the high dose. There was really no timeline determined…

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Added by Christine Piacentino on August 24, 2010 at 10:00pm — 9 Comments

RDSP - Not for our boys

While looking for government programs here in Canada for people with disabilities, I happened upon the Registered Disability Savings Plan. It looked great. The government would match from $1000 to $3000 per year for money put into these accounts. There was more money available for low income households as well. We thought this would be a great way to put some money aside for their future needs



I had an appointment with the bank today to find out some more details about the plans. I… Continue

Added by Andrew Kerr on August 23, 2010 at 4:05pm — 6 Comments


Staff
Why did Blake die? Why do some boys die so young?



I first met Whalen, Blake’s dad, just after Blake was diagnosed. It was summer, just before our Annual Connect Conference scheduled in Pittsburgh, PA. Whalen rode his bike from Florida to Pittsburgh. Red-faced, he arrived- tired, hot, and smiling. From that day on, Whalen and Allison were committed to help Blake and every other boy. We met often – conference, marathons, and in Washington.



We lost Blake last week. While showering he… Continue

Added by Pat Furlong on August 17, 2010 at 3:50pm — 4 Comments

2010-06-19 Motivation and Perseverance with Duchenne

I wrote an article on my personal blog regarding my motivating factors. Out of my top five motivators, family rang in at number 2 and happiness came in at number 1.





Living with Duchenne Muscular Dystrophy can try anyone's will, patience, and

resolve. Over the past 8 years we like many other families have had our

share of difficulties with doctors, agencies, and the condition

progression… Continue

Added by Servais Family on August 13, 2010 at 2:08pm — 1 Comment

2010-02-12 Living with my Brother

(From old blog)



Due to the learning challenges that are sometimes associated with Duchenne we go to downtown Milwaukee for dyslexia tutoring. Whenever we

get there, my Mom would first have to drop Lucas and I off by the front

doors since the snow is way to deep along the curbside to go in.

Sometimes we would bring the stroller or sometimes the walker. The last

time we went we brought the stroller. When Lucas would get into the

stroller, we would head inside.… Continue

Added by Servais Family on August 13, 2010 at 2:01pm — No Comments

2010-05-02 X-Wav Honda Element

(From old blog)



We recently had the opportunity to have a first hand look at a converted Honda Element for wheelchair access on the passenger side. I was very

pleased in what I saw.



First off I have not been impressed with some of the accessible transport vans on the market. We once owned a

minivan and known many people who owned minivans. We determined that all

minivans are just pieces of junk. Converted or not – these cars never

seem to last very long.… Continue

Added by Servais Family on August 13, 2010 at 2:00pm — 1 Comment

2010-01-30 Report Cards Are In

(From old blog)



With a lot of effort on Lucas' part and on our part for breaking things down for him - Lucas got all A's on his report card.



We have been told several times in the past to not focus our time on

Lucas' learning - just let it go. I am so glad we didn't listen to those

folks and never gave up. Now albeit these straight A's would not have

been possible if we left Lucas completely on his own to do the work as

it was presented to him. I give huge… Continue

Added by Servais Family on August 13, 2010 at 1:59pm — No Comments

2010-01-01 Time Off

(From old blog)



It has been nice to have a break from the normal routine for a couple of weeks. Between Christmas and New Years I usually have off from my job

and the family takes advantage of it. One of the things however that we

don't get a break from is the daily stretching that Lucas needs. We've

done our best to make sure that Lucas is still getting that over the

holidays. All his other appointments - therapy, tutoring, etc. have been

pretty much put on… Continue

Added by Servais Family on August 13, 2010 at 1:56pm — No Comments

2009-10-03 - Garage Ramp

(From old blog)



We finished the garage ramp - well almost. I got a couple of fine tuning things to do. We built an 8' x 5' platform in front of the door, with a

five foot ramp extending from it. We built it primarily out of composite

decking material and treated 2x4s.







This is the last ramp for the house. Next -… Continue

Added by Servais Family on August 13, 2010 at 1:52pm — No Comments

Tattoo

Mandy and I had both been wanting to get tattoos for a while. We each had one previous to our relationship and have often talked about getting another. It wasn't long after the diagnosis she decided she wanted the boys' names, and I thought that would be a heck of an idea. So we finally got them done this weekend. Mandy's is sort of a tribal anklet with their names as a centre piece. I already have an anklet, so I opted for one on my chest, over my heart. …





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Added by Andrew Kerr on August 9, 2010 at 1:30pm — 2 Comments

The Changing Levels of Hope

When my children were little I would tell them the world had been black and white before they were born and things were only seen in color when they arrived. For a short time they believed me, especially when I showed them black and white family photos or when we watched old movies, but they soon figured out it was another one of my crazy tales used to make a point. As our world grows, whether having children or the result of other major life changes, our perspective changes. Life was much more… Continue

Added by Brian Denger on August 9, 2010 at 11:19am — 7 Comments

Moving the blog back

We will be moving our family blog back to the community. In the next several days I will be posting past articles from the old blog here.

M

Added by Servais Family on August 6, 2010 at 5:03pm — No Comments

How to speak with One Voice?

Ok so I had dream about how to speak with one voice..... we don't.... thats right no 'One' person can.



The Duchenne community is too diverse with many boys/girls at different paths and points along our journey.



So I thought lets USE all the different boys/girls to make our One Voice actually work. I got some inspiration from how cancer charities approach fundraising.



So what I thought is to have young boys then the teens then the adults and a girl on an advert saying… Continue

Added by Ian Anthony Griffiths on August 6, 2010 at 10:30am — 12 Comments


Staff
Definition of terms

The roller coaster of Duchenne has been in high gear this week with BioMarin’s announcement to halt trials and one day later, Acceleron’s press release about receiving Fast Track Status. I don’t know about you, but in a certain way, it sounds like Fast Track Status should be a high speed train, capable of 220 mph. The reality is that the Fast Track Status train is the same train, with better fuel (expedited review) and more tech support (FDA interaction).



I am pretty sure, everyone may… Continue

Added by Pat Furlong on August 5, 2010 at 2:00pm — 6 Comments


Staff
It's the little things

Genetic Alliance Gene Screen



Last weekend I participated in the Genetic Alliance Gene Screening films (Marfan, Power of Two, Rick Guidotti, Darius Goes West) on Thursday evening. Many of us are already familiar with Darius Goes West (DGW) so I thought I would concentrate a bit on the other films and the common threads that link all of us together. I wondered how the evening would go, sitting through 3 ½ hours of films on specific rare disease.… Continue

Added by Pat Furlong on August 4, 2010 at 4:35pm — No Comments

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