PPMD Community

February 2009 Blog Posts (12)

Exciting News!!!

Great News. My husband and I are expecting baby number two!! Due in November!! Praying for a healthy brother or sister for Skyler!!!

Added by Windy Jackerson on February 26, 2009 at 6:19pm — 4 Comments

frustration of winter

so, Austin fell today.

he falls everyday, but today he fell in the snow, and crawled up the neighbors driveway until i found him. i told him to wait for me. i told him he would fall. i told him i just had to get boots on the baby then i would help him go see his friend lexi. he went anyway, with the cool confidence of a 10 year old boy. with the pure will power that makes his legs move every day. and i was right. i didnt want to be right. i wanted him to make it. i wanted him to get there,… Continue

Added by jenn on February 23, 2009 at 8:42pm — 5 Comments

upcoming sugery

I have mixed emotions about my sons upcoming surgery. I take everyday one day at a time put I feel when it comes closer to the time I have been having panic attacks. I enjoy every minuet that I have with my boys. Everyone says he will be ok and not to worry. but reality what if they are wrong. I wish people would not tell me that he will be fine. It doesnt take any fear away. I want to say what if he isn't can I come to you and say you were wrong. I think about my son every moment now. I go… Continue

Added by Teresa on February 23, 2009 at 3:46pm — 3 Comments

Tomorrow Never Knows

Paraphrasing Shakespeare's Friar Lawrence from Romeo and Juliet, he says there is nothing so vile that exists on earth that doesn't has some special good, nor is there anything so good that abusing it will not result in bad. We see examples all the time and as basic as water and fire. Water is needed to sustain life, yet abused one can drown. Even something harmful may in fact have benefits such as fire which can destroy and harm, also keeps us warm and is used for cooking. For the DMD… Continue

Added by Brian Denger on February 20, 2009 at 1:46pm — 2 Comments


Staff
From JOHN PORTER - NIH - tell every researcher you know.

This is a notice about availability of funds for new collaborations for therapy development. I apologize if you have received this notice before—it’s a good opportunity and I wanted to make sure it received wide distribution.



NINDS has supported administrative supplements to stimulate new collaborations where at least one party holds and NINDS award. This program seeks to support new interactions of this type that will move basic research activities towards translational outcomes.… Continue

Added by Pat Furlong on February 18, 2009 at 8:30pm — No Comments


Staff
Two Weeks of Travel

UPPMD – Treat NMD meeting in Budapest



If I’m telling you something you already know, forgive me. Treat NMD is a program funded by the European Union (EU) and lead by several groups in Europe. The purpose of Treat NMD is to build an infrastructure that would be able to facilitate care, clinical trials, treatment, and cure for individuals with neuromuscular disease, currently focused on Duchenne and SMA. They received 20Million Euros from the EU to organize and develop essential… Continue

Added by Pat Furlong on February 18, 2009 at 3:30pm — 8 Comments

MDA Camp - Bay Area / Occidental, CA

Just wanted to let you all know that my son, Alex will be attending camp this summer. I am excited and nervous all at the same time. I just spoke to the camp director to get our application. If any other families have a child attending, let me know.

THanks.

Kim

Added by Kim Maddux on February 17, 2009 at 5:16pm — 1 Comment

Hello everyone! . I am joining this group because I am so scared my son has one of the MD's. Let's just say I feel as if I am waiting for the other shoe to drop. Keaten born in March of '06. Got fi…

Hello everyone! . I am joining this group because I am so scared my son has one of the MD's.



Let's just say I feel as if I am waiting for the other shoe to drop.



Keaten born in March of '06. Got first shots in May, then spent the next 21 days in Oakland Children Hospital, almost died, blood transfusions, spinal taps, CT, x-rays, the whole 9, at only 8 weeks old. (they say was not a vaccine reaction, but we're not sure)



After that, his liver reads were totally… Continue

Added by Deirdre on February 6, 2009 at 1:45pm — 10 Comments

Diet and Deflazacort

We have just ordered Deflazacort for our two boys. Before it gets here I am trying to find some information about what their diet should be. What things should they stay away from? My children are pretty healthy eaters but sometimes there are things we think are healthy and when we actually look at labels we discover they are not. I read something about a low sodium diet. What should the daily intake of sodium be? If anyone has some information about this please let me know!

Added by Shannon Thomas on February 6, 2009 at 11:03am — 6 Comments


Staff
My thoughts on a recent news article

On February 2nd, 2009 an article was published that many in the Duchenne community, especially those following the PTC124 trials and information may find confusing. The publication in PNAS (Proceedings of the National Academy of Sciences) by Auld and colleagues focuses on the difficulties of relying on a single high throughput screen (HTS) assay for the discovery of potential drugs. High throughput screens are used in the early stages of drug development to identify potential molecules that… Continue

Added by Pat Furlong on February 3, 2009 at 12:31pm — 3 Comments

Grandparents make a difference

Hi, my name is Donna. This is my first try at starting a blog, not sure I understand the whole concept but here goes. I am the Nana of an 11 year old with Duchennes. In reading alot of the blog entries I have noticed so many single parent families. It breaks my heart to see this,,this was how it first was with my daughter also when we found out our Dykota had Dychennes at age 4 she had been newly married to a wonderful man who has taken every interest in Dykota to heart as if he was his own. Up… Continue

Added by Donna Churchill on February 2, 2009 at 6:48am — 4 Comments

working mom?

Are you a working mom? Would anyone want to post what they do, marital status, etc.? I am in an interesting place with work and was wondering how all of the other parents manage this. I work full time, carry the health insurance and am separated. At some point I will need to be home for Ben more than I am now (I work 12 hour night shift) and am not sure where I'm headed.

A quick poll?

Laurie

Added by Laurie Botwin on February 1, 2009 at 2:24am — 5 Comments

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