Hey! Jen!! How are you. I am fine!! I work in a school in Spring Lake as a DataManager. I took a break from teaching. Aaliyah is doing well she is almost 18, was diagnosed with Asbergers in. 2008. She is homeschooled and ha thriving. How us Ryan??? And Sara? Please call me

Hi Jennifer,

Just wanted to say thanks very much for your kind words and support it really a means alot.

Joanne

Hi Jennifer,

I got to this group by coincidence since I happen to be in Disney with no medicine for my son and getting crazy!! I admire you energy and drive. Congratulations!!

Well, you may have seen my post to see if anyone can help me with a solution to get Deflazacort/Calcort borrowed or Purchased. If you know of anyone, please let me know.

God bless your energy, passion and your son.

Leslie
Here is my phone incas eyou hace any ideas. Thx!

Hi Jennifer,
I just noticed your license plate. I live in Plantation, Florida and my plate is
"CURE DMD".
Hopefully both our wishes will be a reality - god willing.
Hope your little guy is doing well. Mine is Alex, age 13 and is doing really well.

Love your car tag! What a clever way to raise awareness for DMD!

Teresa

Talking about being away for a long time...wow...November and now I return a message. We are okay...Daniel is holding his own...we are in Cincinatti at the hospital for our yearly visit...today is day 1 and the testing day. tomorrow is the Drs. visits and friday is a new test to check growth hormone levels...not sure what comes after that test, but interested in finding out. He is on Deflazacort, and im sure thats the big reason why.

How have you and family been? sorry I havent written in so long :0

Jen
My grandson is 20 months old. I am doing a lot of research on different companies that are working on a cure. Myomics is testing various compounds to come up with a cocktail that will strengthen muscles to give us all more time.
JEff

Jennifer,

Just wondered if you guys went ahead with a muscle biopsy or not?

Janine

Hey Jennifer! Thanks for the shout out! It has been a REALLY long time since I have been on here!! Things are going good for us. We went to see Dr. Wong back in February and Wyatt is still doing ok-so that was good to hear!! How is Ryan doing? And you? I imagine the weather in Florida is great about now! It is pretty good in Houston! Soooo glad I do not live where it gets and stays cold ALL winter! Y'all take care!

Jill ;)

Hi Jennifer,

How interesting that you used to live in Michigan and now teach school in Jacksonville. My wife, Danelle, and I lived on the north side of Jacksonville from '96-'99 and have now moved back up to Michigan. The warm weather in FL sure is nice!

Thanks for welcoming me to PPMD. Danelle is on every day and keeps me udated, but there are times when I just want to keep up on stuff myself:) We are starting steroids next week because we have seen such a dramatic decrease in Matt's strength over the past few months. We are praying that this will give him extended strength and encouragement and keep him from falling as much.

God bless, and keep praying for a cure!

Mark

Charlie is 9 1/2 (6/25/99). What you expoerienced with Dr Smith is not that unusual. There seems to be a huge opportunity for a better understanding of facts and details @ Duke. From what I've heard Dr. Wong and her team have all of those facts and details but I have no personal experience with her yet. I've never heard of any deficiencies though. Let em know if you'd like to talk vs. type and I'll get you my contact info.

Best wishes to all of you.

Yes, she is the PT. She is also the one who made the stretching video for PPMD. She is very busy but very good. I would recommend that you do NOT see Dr. Massey. send me an email to cjr@nc.rr.com w/ your Ph No and I'll give you a call if you'd like. Charlie has seen Dr. Smith once. We typically se Dr. Vern Jule. He is the best that we've been able to find @ Duke.

Do you currently live in FL or NC?

I bet you're glad to have missed last night's snow storm!

Charlie currently goes to Duke. We have contacted Cincinatti Childrens with the intent of seeing Dr. Wong but today UNC opened a Wellstone Center so we were waiting to see what that would bring. It seems that it will be some time before the UNC Center can offer anything for Charlie so we may visit their MDA Clinic (UNC's). We are still open to Cincinatti though. We shold make a decision soon. The only draw for us @ Duke is Laura Case.

It is in Hernando County. About an hour from Tampa.

Thank you for your comment, Jennifer. We are originally from Rocky Mount, N.C. , but have lived in S.C. for 13 years. I have a question???? Does your son wear night braces or "Batman boots" as we call them? Brandon just started wearing them, and they make his legs so hot. The newness has worn off and now he's complaining. Do you have or do you know anyone who has any suggestions? Thanks a million.

Julie

Jennifer
It is my grandson who is 15 months. We just found out last week.
Jeff

Hello Jennifer. Your children look gorgeous too. I love the photo of them both having a cuddle. Hope Ryan is doing well. Great that we have been able to meet through this fantastic form.

Happy New Year to you and your family xxx

I have to tell you a funny story. Now that Alec is talking, he is so cute to listen to. He and his older brother were playing cops and robbers. Alec said "hide, the boogaloos are coming!" Joe corrected him saying "you mean the burglars", Alec said "ya, the boogaloos"!!

Thank you for your kind words. We are in this fight together. I have made it my mission to educate myself in everything concerning this disease. After numerousa emails and phone calls my grandson got in the PTC Clinical trial in June. It has been very hard he and his mother making those long trips every 3 weeks. It has also been frustrating because the clinical site had been giving incorrect or conflicting information.

They are strong and will get through the frustration. We pray for strength, guidance and as always for a cure.