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Michelle's Page

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Prasad Surampudi joined Michelle's group
Mar 29
Sheryl Marrazzo joined Michelle's group
Sep 25, 2013
Andrea Miklus joined Michelle's group
Mar 4, 2013
Michelle replied to Marian Lamberson's discussion light winter boots - The North Face
"We have them too.  Got them b/c they were so light.  About $50 on sale but worth it."
Aug 28, 2012
Michelle posted a photo
Jul 19, 2012
Renia Noel replied to Michelle's discussion Welcome to the new Massachusetts family page in the group Massachusetts Families
"Hello everyone,  I'm thrilled to meet other members in MA.  My Luke is 7 years old with 3 older sisters; he is at a stage were I would love to get him together with other children who have the same "likes".  Renia Noel"
Apr 10, 2012
Renia Noel joined Michelle's group
Apr 10, 2012
Kira Mullaly joined Michelle's group
Apr 7, 2011

Profile Information

About me:
Married to Giles, and working full time. Mom to Jake (7) and Calvin (5).
About my family:
We live in the Boston metro area. I feel so fortunate for the support of our many DMD friends/families that we've met on this journey.
Name(s) of child(ren)/individual(s) with Duchenne:
Jake
Age(s) of child(ren)/individual(s) with Duchenne:
13-18
City:
Braintree, MA

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Comment Wall (13 comments)

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At 7:42pm on August 14, 2010, Scott Harris said…
Hi Michelle,

Thanks for the welcome :) Its nice to hear that you have family here in Monson! Hopefullly we can all get together sometime. We are still adjusting to this diagnosis, But if anyone needs someone to talk to, or wants to get something going locally, like a run, bake sale, (we were thinking of having a yard sale and have all the money we make go to PPMD), or any other kind of fundraiser, please let me know. I find the busier I keep myself, the better I am at dealing with it.

Sincerely,
Scott and Kim
At 3:11pm on April 29, 2009, cindy q said…
Please note the location for the MGH DMD Parent round table on Saturday, May 2 is at the Holiday Inn in Rockland, MA.
At 2:39pm on January 23, 2009, Cheryl Markey said…
Hello, Michelle
Yes, Adam is an Earnhardt fan! Yes, we have been to Louden twice and don't worry they are very handicap accessible and getting into and out of the races is very smooth going and easy......you get right to the handicap parking area as long as you have the handicap plate or window sign.
Adam was lucky to have met Jr. during the VIP tent visits that the races d o for their fans, Adam. The handicap seating is right there infront of the track behind the fence. The disabled in wheelchairs are admitted for FREE and the aides that attend with him are only charged a small fee.....think when we went in 2004 I paid $65.00 for my ticket, they may have increased it by then. Not too bad of a deal!
I used to live in Newburyport Mass. as a child, and still have relatives in the surrounding area around Newburyport, and even some in New Hampshire!
I am always saying keep the boys active, and out in the public, ADA came about when Adam was a baby and they still need more work to be done in this area. Others need to see how we live and other families live with the disability in their family.

Great hearing from you,
Cheryl
At 9:46am on January 14, 2009, Jeff Harvey said…
Which Doctor do you guys like Dr Darras or Dr Tseng at MGH? Just curious. Also do we know how many people in the boston metro are who have duchennes?
At 3:55pm on January 5, 2009, Kathy said…
oh! And Keelan does not have the stop codon, he has missing exons 42-25. I've heard of wonderful things happening with PT-124!
At 3:54pm on January 5, 2009, Kathy said…
Good to know we can see both doctors. Does insurance usually cover both or only one? Thankfully we have a friend who works with insurance who can help us with the ins and outs that we'll be facing with that soon too.
At 5:37pm on November 4, 2008, Benjamin Dellay said…
Michelle:
Thanks for the Welcome, I will check out that group as well. I just recently got back on the internet with the PPMD community after being off for a while. I look forward to talking with you.

Ben
At 8:35pm on November 3, 2008, Benjamin Dellay said…
Hi Michelle: I do not live in MA but an fromk there and I have a lot of family in that area. We make visits out that way about every 2 years. My family lives in the North Attleboro area. If you are any where near there maybe our families could meet. We are planning a summer 09 trip. Ben
At 8:02pm on September 30, 2008, Jill Castle said…
Thank you so for your support. When things get tough, I think of all the family's out there that are counting on us to prove this works. I also htink of all my dear friends who have boys that PTC124 won't help. But I know if this is successful it will regenerate and fuel the other solutions for all the boys. By the time your son is 6, hopefully this will be a proven interventinand it will be available.
At 4:16pm on August 5, 2008, Karen Rossetti said…
Michelle, I would be more than happy to join a Massachusetts Families group!
I'm fairly new at this, so bear with me....

Karen
 
 
 

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