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Extending our reach to teach about Duchenne

Started this discussion. Last reply by Christine McSherry Jan 6, 2010. 1 Reply 0 Favorites

Please post any events you are having to support DMD

Started Dec 1, 2009 0 Replies 0 Favorites

Confused-What supplements to use?

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cindy q shared Annie Kennedy's blog post on Facebook

The Big Day is Almost Here!

Nov 20, 2015

Andrea Cleary replied to cindy q's discussion Learning to read

"Hi Moein, Yes, that sounds like my son too, very smart but can't show it through written school tests. Simon finally learned to read well by grade 4 and now loves to read, but only about subjects he likes. He has some form of dyslexia and has…"

Sep 22, 2012

Moein replied to cindy q's discussion Learning to read

"Hi, My son who is 7 years hates reading and school.He is smart out of school and when you talk to him you will never expect that he has learning delay!he is too slow in writing and spelling,bad at Math.His attention improved,but he is still…"

Sep 22, 2012

Angela Bourgeois replied to cindy q's discussion Electric Scooters for fun

"Thanks for the information Andrea. "

May 29, 2012

Profile Information

About me:: Married to husband, Curt, 20 years. Mother of triplets, Calvin, Emily and Jake, age 10.

About my family:: We are the proud parents of 3 beautiful triplets. They turned 109 in Nov. 2011.
Cal was diagnosed at age 5 with DMD.

Name(s) of child(ren)/individual(s) with Duchenne:: Calvin

Age(s) of child(ren)/individual(s) with Duchenne:: 7-12, 13-18

City:: mansfield, ma

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At 2:16pm on January 18, 2011, Dawn Dillon said…: Thank you for the email. Mansfield isn't too far away. Perhaps we could meet some time and introduce the boys. My son, Luke, is 9 and was doing really well, but recently has seemed to degenerate a bit. Brings all the old emotions back from finding out the diagnosis....I sure hope the brink on which we are standing for better treatment and possible cure will soon be crossed. God bless...

At 8:03pm on September 28, 2009, Perlita & Gordy Hains said…: thx - we have over 200 5k'ers and 50+ 1 milers... it's going to be a great day for Levi. Hoping to send some of the proceeds to PPMD.

At 9:40pm on July 7, 2009, Perlita & Gordy Hains said…: I will most certainly check out galsfor cal....enjoy the day!!!

At 8:47am on February 9, 2009, jenn said…: hi there, wow, triplets! you must have been busy during the toddler years! I'm not sure where warren is, but im not good with that sort of thing. we live in a small town, just north of brattleboro vermont if that helps you at all in figuring out where we are, i always depend on our GPS to get me where we need to go. anyway, thanks for your message, hope all is well with your family, jenn

At 7:09pm on January 27, 2009, StaffPat Furlong said…: Cindy,
Please let me know if I can be of help. Your family is bsolutely beautiful! I think the good news is that Childrens and Mass General will be doing trials. You might register on www.duchenneconnect.org. It provides the ability to search for information and connects you to clinical trials. Once trials are posted, you will have the opportunity to read details and make decisions about participation.
Sincerely,
Pat

At 12:37pm on January 5, 2009, Kathy said…: Thanks for the info! We are seeing Dr. Kang at Childrens. We really like him because he is so nice and is also doing some clinical trials. But, we have heard about MASS Gen. and the Jett foundation. Is it possible to go to both? Not sure how all of this works yet.

At 7:22am on September 19, 2008, Joanne Wechlser said…: Hi Cindy, Hope the transition back to school was good. My kids are loving it, but getting up in the morning has been a challenge for all of us. They start early up here. I'm glad I had the chance to meet you. Let us know when your in Vermont.
Joanne

At 4:05pm on September 18, 2008, Eileen DeLong said…: Hi Cindy,
One of my boys is Calvin also. He is 12 and I have another boy Jared 9. They both have deletion 3-7. We don't live far from you.
I saw your boy is having trouble with reading. Both my boys struggled. Calvin seemed to finally get better around 3rd grade. Jared is still having trouble and he is in the 4th grade. Do you have an EIP for him yet? It has really helped with Jared. He gets special reading and writting help. We just try read with them everynight after stretches.
Eileen

At 9:54am on September 14, 2008, Joanne Wechlser said…: Hi Cindy,
I think we met on the shuttle from the airport. I'm the one from Vermont. Hope you had a good conference. Joanne