A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Thursday, October 4, 2012

The 2012 Niemann Pick Challenge

October is National Niemann-Pick Disease Awareness Month.  

It was this time last year that we were officially telling our friends and family that Dan was diagnosed with Niemann-Pick Type C and participating in the Challenge that ended, coincidentally, the day Dan died. 

This year there is another Challenge: to get 20 people to each donate $20 in honor of the 20th Anniversary.  If you can't donate $20, any amount would be gladly accepted and greatly appreciated!  All contributions are tax deductible (contact your accountant or financial planner for advice).

So How Do I Donate?  You can click here and include Daniel Flinton in the Dedication/Gift box.  You can also designate your funds for a specific purpose (such as NPD type or research grants or admin costs, etc), if you wish.  The link is also near the bottom of the right column "Donate to NNPDF" via Network for Good.  Network for Good will add an administrative fee, which is also tax deductible (contact your accountant or financial planner for advice).

What If I Don't Have Any Money?  You can still help, by spreading awareness!  Share this blog or any others in the Family Website/Blog page located here.

Don't Want to Donate Online? You can mail a check or money order with Daniel Flinton on the memo line to:
PO Box 49
Fort Atkinson, WI  53538

As copied from the National Niemann Pick Disease Foundation (NNPDF) website:

This year, the National Niemann-Pick Disease Foundation will mark 20 years of providing services to families affected by NPD, and raising awareness and funding for research into the causes and treatment of NPD.

Though we all wish there was no need for an organization dealing with the heartbreaking disease that is Niemann-Pick, the reality is, that until there are effective treatments and a cure, the need is great, and the NNPDF can be proud of all that it has achieved in the fight against NPD.

Twenty years ago, in 1992, families faced NPD on their own, without benefit of a support group.  Barb Vorpahl, one of the founding members and the current NNPDF Board Vice Chair, recalls how, when their daughter, Stacey, was diagnosed with NPC as a toddler, there was one paragraph in one book, and that was all the information she could find, anywhere, about the disease.
Compare that with the information the foundation now makes available to families -- indeed, this Web site alone has grown to be an accurate and in-depth resource for families worldwide, with thousands of "hits" daily.  The foundation also provides publications, newsletters, an annual conference, listserv groups, social media sites, telephone consultations, referrals and more, all to support families in meeting the challenges of NPD.
From the original six families who founded the organization, membership in the NNPDF has grown to 400+ families. Member families benefit from the foundation's programs that help them connect with others who truly know and understand, and from the foundation's work to keep members and all interested parties apprised of the latest in news and research information. 
Families struck by NPD also benefit from the advances made by essential research driven by the foundation and its members' fundraising efforts.  In 20 years, the NNPDF has directed almost $5 million to NPD research!  And exciting strides are being made.  The gene responsible has been identified, and several clinical trials have been conducted or are being planned for the future.


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