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 —
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. Continue
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…
Added by Dee on August 30, 2010 at 6:24pm —
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… Continue
Added by Christine Piacentino on August 24, 2010 at 10:00pm —
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 —
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 —
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.
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
Added by Servais Family on August 13, 2010 at 2:08pm —
(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 —
(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 —
(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.
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 —
(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 —
(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 —
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. … Continue
Added by Andrew Kerr on August 9, 2010 at 1:30pm —
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 —
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.
Added by Servais Family on August 6, 2010 at 5:03pm —
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 —
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 —
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 —