|
How You Can Help |
|
Donate: The most promising drug available to slow the progression of the disease, and improve eye movement, swallowing, and other symptoms is Miglustat, commonly known as Zavesca. The 12 month trial documents this drug helps to improve symptoms, but is not a cure. Zavesca may allow us to “buy time”, so our children may participate in future trials, and potential therapies. (For the 12 month trial results, please see the Related Links page.) Unfortunately, Zavesca is a new drug, and the cost for one 100 mg pill is $100. Peyton and Kayla will be taking up to three 100 mg. pills each day, which is over $9000 per month for one child. Our insurance has approved coverage of this drug for one year, but are unsure if they will deny us based on the astronomical cost. If it isn’t covered, we have no other choice but to pay for it out-of-pocket. Many people have asked how they can help. Most importantly, we ask that friend’s and family keep our children and family in their daily prayers for we firmly believe “with God, all things are possible.” There is no greater value to us than the gift of prayer, but we face the reality that funding for medication, therapies, and potential research is extremely high. If you would like to financially contribute, you can do so at any of the below locations. Please be assured your contribution will remain confidential to everyone, including us. Liberty Bank located in Oregon or U.S. Bank nationwide. Please make contributions to: Hadley Hope Fund For a list of locations, please see the following links: Liberty Bank Locations US Bank Locations
|
|
HADLEY HOPE |
|
Attend A Fundraiser: For those who would like to attend one of our fundraising events, please contact either Bryan or Laura, or email info@hadleyhope.com. We will be glad to get you tickets to any events posted, and would love to see you there! See our Events page to learn more about: Evening of Hope: June 14, 2008 Jacksonville, OR Evening of Hope will go directly toward medication and therapies for Peyton and Kayla. Any cash donations from businesses or individuals who need a tax deduction, contributions can be made through the Ara Parseghian Medical Research Foundation, earmarked under the Hadley Hope Fund.
|
|
Spread the Word:
If you know friend’s or family in an area where one of the events will be held, please spread the word. It will take individuals who care and are concerned to help us with communicating all the details of upcoming fundraisers. We depend on you to send those you know, our web site in a quick email about our situation, and others who are living with this disease. Perhaps there are interested sponsors, corporate or individual who might be interested in funding specific research projects for NPC. Thank you for joining us as well as other families who are fighting to find a cure for all children who have NPC.
|
|
Help Fund Research:
If you would like to financially contribute, and receive a tax deduction at the same time, please donate to the Ara Parseghian Medical Research Foundation. All funds will be earmarked for research as directed by the Hadley Family.
Ara Parseghian Medical Research Foundation c/o Hadley Hope Fund 3530 E. Campo Abierto, Suite 105
Email: victory@parseghian.org Site: http://www.parseghian.org
|
|
Knit CureCaps From the Addi & Cassi Hempel’s site: www.addiandcassi.com
The idea for CureCaps started when our friend, Elaine Walker, stopped by our house a few days after hearing the news about our Niemann Pick Type C diagnosis. When Elaine dropped by she brought along some handmade caps to cheer us up. Elaine wanted to know if there was a way she could personally help raise money for research and accelerate finding a cure for NP-C.
What Are CureCaps?
How Do I Make A CureCap?
To find out more about CureCaps visit: http://addiandcassi.com/?page_id=11
Where To Send CureCaps: Ms. Addi and Cassi Hempel |
