A Rare Lysosomal Storage Disease

12th Annual Niemann-Pick Disease Awareness Month

12th Annual Niemann-Pick Disease Awareness Month

Each year October is set aside to have a focal point of Niemann-Pick Disease Awareness Month! The National Niemann Pick Disease Foundation has been promoting this the last 12 years to help create buzz and awareness about this horrible disease. Along with families affected by Niemann-Pick, people in the community also come together to get involved. Although there are a few types primarily A, B, and C…. nonetheless, they are horrible on the loved ones not even mentioning the patient themselves having to endure this crazy “life”.

Brisan Parker On BeachThe thought behind the focus is to highlight those in our community and celebrate these patients afflicted with NP-D. A time to arrange fundraising activities, create a publicity event to further educate our surrounding communities.  Education is key for our smaller disease but really any rare disease. Thank goodness we have a disease name we can pronounce? 🙂 Our disease does have a lot of correlation with other more commonly known diseases. The thought and hope is to get research to “play nice together” and share even more information.

Throughout the past few years some exciting news has came about with the cyclodextrin treatments and even the drug trial started earlier this year by the NIH.

Through contributions from others, we can continually advance research and find effective treatments with eventually a cure for Niemann-Pick Disease!

Remember — awareness drives donations, donations drive research, and essential research will find effective treatments and a cure for Niemann-Pick Disease!

Some Ideas For Fundraising

  • Bracelets
  • Recipe Book
  • Bumper/ Window Stickers
  • Candles
  • Banners
  • Small leaflets
  • Brochure
  • T-Shirts / Hats / Hoodies
  • Local Press Release
  • Bowl-a-thon
  • Car Wash
  • Neighborhood Clean Up
  • Shave your head if you raise “x” amount 🙂
  • Governors' statewide proclamations
  • Mayors' citywide proclamations
  • Friends and Family letter campaigns
  • Persevere wristband sales
  • Casino night
  • Family luncheon in celebration of a loved one with NPD
  • Yankee Candle fundraiser
  • NP day at the amusement park
  • Classic car show
  • Distribution of brochures
  • Spaghetti dinner fundraiser
  • Walk-a-thons, 5K and 10K run/walk
  • School poster campaigns
  • Golf tournaments
  • Silent auctions & raffles
  • Chamber of Commerce mailing
  • Penny challenges at elementary schools
  • Add NNPDF web site logo & link to your e-mail signature line. Click here for info
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