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!!!)
Thursday, February 25, 2010
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.......
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