Hi Laurel, I can't offer any suggestions, my son is much younger than yours, but I can assure you, you will be in our thoughts. I hope things improve. Keep us...
Hello Laurel, I'm sorry to hear that your son is having so many problems. I can't really offer much advice. I can relate to the staff infection, as I had a...
Hello all friends of MD We are a group of concerned parents/grandparents/friends of DMD who has started a new community for DMD. Our goal is to raise money for...
You might want to consider joining up with parentprojectmd.org. They are already doing so and working with legislatures and have a worldwide presence. I am...
gw
vaward@...
Mar 2, 2003 12:55 am
8615
Ginny, Who is this message intended for? Adele ... From: gw [mailto:vaward@...] Sent: Saturday, March 01, 2003 7:55 PM To: MD-List@yahoogroups.com ...
People who were starting a new group to fund research into MD. Ginny...
gw
vaward@...
Mar 2, 2003 1:08 am
8617
I put this list together for a friend and thought I would share it. Kathy ************************ ...
Kathywilburn1@...
Mar 2, 2003 4:19 am
8618
Here's what we do. Couldn't find sox anywhere that would stretch around the boys' enlarged calves. I buy a box of the 100% cottom stocking stuff that the...
Kathywilburn1@...
Mar 2, 2003 4:29 am
8619
Hi all: Well, the doctors appt on Wednesday really wore MJ out. She started to seem a bit better yesterday (Friday) but by last night, we knew something was...
Hello Ginny :-) The money we raise will not go to either PP or MDA. Almost all the money they uses in research, is to try to find a cure. Nobody, not even...
Do you have any medicines in mind at this time? There has been some mention in some publications in the past about medicines they are studying to see if they...
JoyceGlass@...
Mar 2, 2003 4:04 pm
8622
I think with some diseases it is hard to separate searching for a treatment or cure. When you find one you have the other. DMD may be a disease that falls...
Hello JoyceGlass We are constantly in contact with scientists. Our focus will be a drug/medicine that stop/slow the progression as soon as possible. We dont...
Terry, Very well put. The thing to remember is we are in this for the long term, not just for "our child". I have two sons with DMD. They are at different...
denger2@...
Mar 2, 2003 6:10 pm
8625
Terry, you are very close to the truth about DMD. In the past, as doctor are looking for a "cure" they have found treatments. I don't think research into a...
Sorry but the parents are wrong: treatment is a department and cure is another in muscular dystrophy; cure is: gene therapy, stem cell, mioblast therapy...
I would like to add one little reminder- NOT all children are alike, what might work for one, may not work for another child. Everybody's opnions here does...
... David, I respectfully disagree with your premise that emphatically one area is totally unrelated to the other. The possibility exists that a researcher...
denger2@...
Mar 2, 2003 11:01 pm
8629
I used to have the same problem. I first I bought Christophers socks at Sears/Eatons, then found they were getting tight. At the same time his Hight school...
diana howe
diana.howe@...
Mar 2, 2003 11:01 pm
8630
Hello Brian and all others Just so there are no misunderstanding about Fight for a Futures goal. We are working in addition to all the other communities and ...
... I agree in part; to prove the effects of new drugs we need clinical trial in patients. We don't think that make study without cientific comprovation. But...
While I understand the concern about "competing for resources," I believe it would be good to encourage those who are earnestly seeking to work for the future...
Another way to look at this is that there are some very promising drugs/treatments that have been researched and have shown promise (for example, Utrophin) and...
JoyceGlass@...
Mar 3, 2003 1:32 pm
8635
... Joyce: there are few money to study DMD; every year the researchers make protocols and submitted to PP,MDA, NIH, Rotary, and anothers. If you want you can...
Hello Rich On behalf of all us in Fight for a Future, thank you for your words of wisdom. We all have one goal - fight DMD - not eachother. Berit Fight for a...
Hi all: Well, MJ went to school this morning. It was quite interesting reporting to the school nurse and delivering meds....MJ has 4. Since I'm there with MJ,...
The way I understand things is that from a researcher's perspective, their expertise is the science. They understand the genetic and biological aspects of...
Hi All, I'd like to weigh in on this topic a little bit--I've been pretty quiet on the list lately because I've been busy and traveling a lot, but I still try...
Ralph: the researchs is very slow in DMD; we can't to seat an wait the "official" information; we need participate to hurry the research. For example the...
