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- Meet The Children Who Are Resistant To Contracting Ebola, HIV-AIDSMy life grows more surreal by the day. Four years ago, I was told that my eight year old identical twins have a fatal genetic cholesterol disease called Niemann Pick Type C (the “Childhood Alzheimer’s”) and they would likely not live to see their 10th birthday. Now I have learned from top virus scientists that […]
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June 30th, 2009 at 9:05 pm
Dear Families,
Below is a copy of a letter recently sent to NBC executives in regards to the airing of a story on Niemann Pick Type C Disease last night.
Sincerely,
Susan
Susan McDonald
Administrative Assistant
Ara Parseghian Medical Research Foundation
3530 E Campo Abierto #105
Tucson , AZ 85718
(520) 577-5106
Fax: (520) 577-5212
http://www.parseghian.org
Thank you, NBC, for once again bringing attention to Niemann Pick Type C (NP-C) disease. I want to applaud the efforts of the Hempels in pursuing a cure for their daughters. However, I want to correct the story you recently aired on Dateline, June 28, 2009, in regards to the history of cyclodextrin as a potential therapy for NP-C. Chris Hempel did not discover cyclodextrin as a plausible therapy. The Ara Parseghian Medical Research Foundation began investigating this compound as a potential therapy for NP-C over two years ago before the Hempel daughters were even diagnosed with NP-C. We currently have seven research labs investigating the plausibility of this drug being used to slow down the progress of the disease. (The foundation is also funding 17 additional laboratories investigating other potential drugs and other aspects of the disease.) Our researchers are not only testing cyclodextrin in animal models of the disease but are also studying the chemical structure to improve its effectiveness.
Ms. Hempel became aware of cyclodextrin when she attended a 2008 conference held by the Ara Parseghian Medical Research Foundation. Each year the Parseghian Foundation convenes a meeting of researchers from around the world to discuss the advances in the research and to establish collaborations to expedite the pace of research. This annual conference attracts approximately 100 researchers.
The Parseghian Foundation has been devoted to researching Niemann Pick Type C Disease since 1994 when 3 of my 4 children were diagnosed with the disease. The Parseghian Foundation has raised more than $34 million and has been relentless in the pursuit of a cure for this disease as highlighted several time by the NBC Today show.
The European equivalent of the FDA recently approved the drug Zavesca for slowing down NP-C. This is the only drug approved for use in NP-C patients. The Parseghian Foundation was instrumental in the research of this drug leading up to the clinical trials. It is the hope of the foundation that the FDA will soon approve this drug for use in the United States .
There is a long way to go before a cure is found for this horrible disease. My three children lost their battle with this disease. It is our hope that soon other NP-C children will not experience this fate. If you would like more information about the Parseghian Foundation, please visit http://www.parseghian.org .
Sincerely,
Cindy K. Parseghian
President
July 3rd, 2009 at 2:42 am
I don’t know why this thought comes to mind, but I am reminded of certain similarites between the condition in the movie “Lorenzo’s Oil” and Nieman Pick’s disease. I was so moved by the love and determination of these parents and their beautiful children. Have the parents explored similar treatment options (similar to Lorenzo’s Oil) for these girls? I don’t know how to reach the parents, and not sure this will turn up anything, but feel compelled to give them this information, as it may lead them down another path to explore. God bless!
July 3rd, 2009 at 11:17 am
Dorene,
Thank you for writing! I know that a lot of research is taking place and we are glad that the foundation for research has been laid. Even though as parents we want to make it all happen now, which is a natural response to situations like ours or any situation that is life threatening, we must have faith that research doesn’t jump from point A to Point Z without the proper research. We see it happen all the time that we jump far ahead just to find ourselves peddling backwards to start over because of oversights. The Hempel Family along with other families have been instrumental in attempting to speed things up. At the end of the day all the research benefits families like ours who are dealing with this monster of a disease.
You can visit http://www.addiandcassi.com and go to the contact tab. This is their website which will allow you to reach out to them. Thank you for reaching out to us. The Hempel family is very special and those little angels are cuties!
Mike Stults