February is Rare Disease Awareness month! Wear jeans in support of "Jeans for Genes"and the Global Genes Project.
Saturday, February 12, 2011
Thursday, February 25, 2010
Clinical Trial
Mitch and I flew out to Bethesda, Maryland at the end of January to be a part of a clinical trial being done at the National Institute of Health for NPC patients. They are testing a supplement called N-Acetylcysteine or NAC which has been shown to be a potent antioxidant, detoxify the liver and aid in post exercise recovery in healthy people. In NPC patients, the hope is that it will help fight damage from oxidative stress on the cellular level and protect the liver from further damage.
Right now Mitch is in the middle of the first phase, he is recieving a tablet three times a day. We don't know if he is getting the placebo or the actual supplement. Each phase is 8 weeks and because it is such a short time we probably won't see much change physically. We are doing blood draws every two weeks and mailing them back to NIH for analysis. In phase two he will get the opposite of what he is getting now. Its a small step, but the fact that there is some research being done for a treatment and being a part of it keeps us hopeful.
On a lighter note, we took Mitch to Las Vegas last week for his 21st birthday. We had a good time and initiated him to gambling!(but no drinking!!!)
Right now Mitch is in the middle of the first phase, he is recieving a tablet three times a day. We don't know if he is getting the placebo or the actual supplement. Each phase is 8 weeks and because it is such a short time we probably won't see much change physically. We are doing blood draws every two weeks and mailing them back to NIH for analysis. In phase two he will get the opposite of what he is getting now. Its a small step, but the fact that there is some research being done for a treatment and being a part of it keeps us hopeful.
On a lighter note, we took Mitch to Las Vegas last week for his 21st birthday. We had a good time and initiated him to gambling!(but no drinking!!!)
Wednesday, January 13, 2010
Update
So, I thought I had posted stuff after 10/9/09, did the time go by that fast??
An update on all the fundraisers we did in October. I got a list from the NNPDF showing donations made in honor of Mitchell as of 12/15/09. We raised over $4,000 with the friends and family letter mailing and $1000 with the recycling drive. Thank you to everyone who showed their support by sending in a donation, dropping off recycling and/or supporting our Golden Spoon yogurt fundraiser. And of course, thank you for your continued prayers and encouragement!
Mitchell is doing fine. He just started with a new personal trainer 3 times a week to help him with strength and balance. He seems to like it and never complains. Of course getting his favorite Starbucks drink, a Venti Peppermint Mocha Frappichino, after his workout is a good incentive too!!
Mitch and I are getting ready to go to the National Institute of Health in Bethesda, MD. for a new clinical trial. This trial is to test a supplement to see if it has any benefit to NPC patients.
More about that later.
Hope everyone's new year started out great and continues to be a good year!
Persevering for a cure.......
An update on all the fundraisers we did in October. I got a list from the NNPDF showing donations made in honor of Mitchell as of 12/15/09. We raised over $4,000 with the friends and family letter mailing and $1000 with the recycling drive. Thank you to everyone who showed their support by sending in a donation, dropping off recycling and/or supporting our Golden Spoon yogurt fundraiser. And of course, thank you for your continued prayers and encouragement!
Mitchell is doing fine. He just started with a new personal trainer 3 times a week to help him with strength and balance. He seems to like it and never complains. Of course getting his favorite Starbucks drink, a Venti Peppermint Mocha Frappichino, after his workout is a good incentive too!!
Mitch and I are getting ready to go to the National Institute of Health in Bethesda, MD. for a new clinical trial. This trial is to test a supplement to see if it has any benefit to NPC patients.
More about that later.
Hope everyone's new year started out great and continues to be a good year!
Persevering for a cure.......
Friday, October 9, 2009
Local Press release
Our fundraising efforts have been published in today's edition of the Simi Valley Acorn (a free community paper) and online at the Ventura County Star under local Simi Valley News, "your news" feature. The links are attached.
http://www.venturacountystar.com/news/yournews/yn-simi-valley/
http://www.simivalleyacorn.com/news/2009-10-09/Health_%28and%29_Wellness/Rare_disease_inspires_local_family_to_raise_money_.html
http://www.venturacountystar.com/news/yournews/yn-simi-valley/
http://www.simivalleyacorn.com/news/2009-10-09/Health_%28and%29_Wellness/Rare_disease_inspires_local_family_to_raise_money_.html
Thursday, October 1, 2009
Golden Spoon Frozen Yogurt Fundraiser
On Friday, Oct. 16th AND Sunday, Oct. 18th, visit one of the five participating Golden Spoon Frozen Yogurt stores in Simi Valley, Thousand Oaks(2), Agoura and Newbury Park; mention the NNPDF fundraiser and 20% of your purchase will benefit the NNPDF. For the addresses of the participating stores click on the link: http://www.goldenspoonvc.com/stores/.
If you want flyers for this event to pass out and share through email, please send me a request at tab1095@sbcglobal.net and I will email you a copy.
Wednesday, September 23, 2009
Stella and Dot Fundraiser
My friend Lisa is doing a jewelry fundraiser for NNPDF from now until the end of October.
15% of the proceeds will go to the National Niemann-Pick Disease Foundation.
To shop this fundraiser, go to www.stelladot.com/lisasepe and click on Find your Hostess in the upper right corner. Type in Terri Brubaker as hostess and you will be able to shop the catalog and your purchases will be counted toward the fundraiser.
Thanks!!!
15% of the proceeds will go to the National Niemann-Pick Disease Foundation.
To shop this fundraiser, go to www.stelladot.com/lisasepe and click on Find your Hostess in the upper right corner. Type in Terri Brubaker as hostess and you will be able to shop the catalog and your purchases will be counted toward the fundraiser.
Thanks!!!
Tuesday, September 15, 2009
Cans for a Cure
October is NPD awareness month. So I am organizing an alumimum can drive to raise funds for the NNPDF. Between now and the end of October please save your aluminum cans and we will collect them and take them to the recycling plant. I plan to do the collections on Oct. 30 and 31st at various locations in Simi. There will be more details to follow.
Please ask your friends, neighbors, church groups, places of work, etc. to set aside their aluminum cans for this cause. I can do pick ups throughout the month if needed. Please email me if you have any questions. Also, if you don't live in the Simi Valley area but would like to help with this can drive in your community, please email me for more information at tab1095@sbcglobal.net. Please, help us spread the word about this cause and raise awareness and funds.
Thank you for your support!!
Please ask your friends, neighbors, church groups, places of work, etc. to set aside their aluminum cans for this cause. I can do pick ups throughout the month if needed. Please email me if you have any questions. Also, if you don't live in the Simi Valley area but would like to help with this can drive in your community, please email me for more information at tab1095@sbcglobal.net. Please, help us spread the word about this cause and raise awareness and funds.
Thank you for your support!!
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