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Sheila George
February 22nd, 2004, 01:40 PM
Here is the link to a couple of articles about CBT from Duke University.

http://www.dukemednews.org/news/article.php?id=7404

http://dukemednews.duke.edu/news/article.php?id=7412

(Kim, I hope you don't mind that I included your link, too)

Laura Brodie
February 22nd, 2004, 02:09 PM
Sheila/Kim I thought these were so interesting I sent them to Dr Charakrapani our MPS dOC OVER HERE. Having been told the transplant would not help the brain cells this was real cutting edge stuff - so thanks for the links.
Of course a big thankyou to Alicia and Angel Tommy without whom this breakthrough would not have happened Love Laura

momtoty
February 22nd, 2004, 07:28 PM
Sheila,
I do not mind at all! :lol: now I am going to go read the article from your link. Thanks.

Sheila George
February 23rd, 2004, 01:41 PM
Just thought I would pass along that the 4 yr old mentioned in one of these articles was not Tommy. Tommy had MPSIIIA and this little boy had MPSIIIB. There was another 4 yr old who also passed away due to complications from his transplant and he had MPSIIIB so more than likely they are referring to him.

Either way we still do know that the Bennett family allowed Duke to study Tommy for research so the thanks you's are still very well deserved, because I am sure they will learn many things from that study also. I also thank this other family for making their decision, too. I know who the family is but I am not sure they would want it made public.

I have known this for a couple of days and had been trying to figure out how to post this on the forum. I hope that I have been sensitive to everyone's feelings regarding this matter. It is not my intent to upset anyone but just to clear the facts.

MelI
February 23rd, 2004, 05:04 PM
Thanks for the clarification and the 'sensitive' way you put it, Sheila. I too know that this was about a different child but did not know how to properly word things...

I also thought I would mention...and I really hope I'm not jumping the gun here...that an article written by several doctors (mainly Dr. Kurtzberg at Duke) has been accepted for publication by the New England Journal of Medicine. It is a very thorough journal article that will include all the kids treated for Hurler's at Duke using the stem cells from unrelated umbilical cord blood. I do not know when exactly the article will be released but do know it will be sometime in the next several months. Dr. K is going to let me know when they get the galleys back and will have a publication date at that time as well.

Anyhow, I will keep my eyes open and as soon as I know a publication date I will post it. This journal article is a REALLY important piece of information for the MPS community in my opinion.

Stay Tuned!
Melanie
http://www.caringbridge.org/wa/jacobirish

Sheila George
February 23rd, 2004, 05:14 PM
Thanks Melanie, I am glad that it came across the way I intended it to, I hope everyone else will think so, too.

I look forward to reading this new article that is coming out when you post it.

momtoty
February 23rd, 2004, 06:48 PM
Sheila,
Thank you for the info- and it was delivered perfectly. I wasn't sure if the child in the article was Tommy or not, and I too am sure that Tommy is making a huge contribution to the research also. And thank you to the other family as well.
Sorry to hear about Shelby's seziures at school, I hope you are able to get them under control very soon.
Love,
Kim

Laura Brodie
February 23rd, 2004, 06:53 PM
Sheila, you put that perfectly! I echo all you say.Sorry I made a mistake in the first place ! Laura

Sharon Cochenour
February 23rd, 2004, 07:30 PM
Shelia and Kim
Thanks for the links. I print out all articles about MPS and place them in my notebook for information about MPS for doctors or anyone seeking information.
Dr Kurtzburg was a Dr. Munzers family day and presented information about this subject, including pictures of slides. It was very interesting. I knew it was not about Tommy because his father was there with Hunter and Ciara, while his mother stayed at Duke with Tommy.
I hope they continue to move in the right direction with research to eventually find a cure for these dieases.
Sharon

MelI
March 19th, 2004, 03:48 PM
Hi all,

I just thought I would post a website here as it pertains to the articles mentioned in this thread. I know that Angie wants people to know that it was her beautiful Angel :angel: Kyle that is responsible for this research as she has now posted it publicly on his website. The website address is http://www.caringbridge.org/wa/kyle .

Enjoy, Melanie Irish

http://www.caringbridge.org/wa/jacobirish

Sharon Cochenour
March 21st, 2004, 08:41 PM
Thanks for the web site Melanie.
Sharon