A Friends and Family letter is one way to raise awareness about Niemann-Pick. The letters can be sent at any time to your family, friends, and coworkers but can be more effective when sent in connection with a special event (wedding anniversery, birthday, Christmas, Hannukah, etc).
Many people are uncomfortable asking directly for contributions. Often, a Friends and Family letter can inspire others to begin their own fund raising even without a direct appeal - after all, most people want to help out.
Remember that these are samples. Your own letter should reflect your own experiences and concerns. When you send out a letter, please send a copy to Melissa King so she can report your efforts in the Newsletter.
For Friends and Family Members
December 2001
Dear Friends and Family:
As we approach the holiday season, we all tend to reflect on the blessings that have been bestowed on us and look to the future with hope.
Many of you know that our nephew and niece, Adam and Amanda, suffer from Niemann-Pick Type C. This is a rare genetic disease which prevents the body from breaking down cholesterol. The cholesterol accumulates in the cells of the spleen, liver, and brain, eventually leading to neurological deterioration. Few children who are afflicted with Niemann-Pick survive past their late teens or early twenties.
Amanda was born with a disfunctional liver and, in the first six months, had her spleen removed and received a liver transplant. In addition to Niemann-Pick, she also suffers from Cystic Fibrosis. Her father calls her "The Ultimate Poster Child". Today, her new liver is functioning well but she is experiencing the symptoms of Niemann-Pick Type C. Once an active child, Amanda can only walk with assistance. A new specialized walker lets her stand and has improved her leg strength but she is most comfortable scooting along the floor. Despite her medical problems, she is a happy child who frequently laughs at her father's jokes and makes her wishes known, even though she can't speak!
Adam passed away last year, four years after he was diagnosed and six years after symptoms became noticable. Because the symptoms of Niemann-Pick resemble other disorders, it is often hard to diagnose. His first symptoms were a speech impediment and some clumsiness. He went from being a normal Kindergartener who loved to play through a difficult period of deterioration, with problems in school and difficulty walking. After being diagnosed, he began special education classes, got a feeding tube, and was much happier. Ultimately, he succumbed to respiratory complications from the disease.
There is no cure for this disease but the National Niemann-Pick Disease Foundation and the Ara Parseghian Medical Research Foundation have been raising funds for years to identify the cause of the disease. In July 1997, the NPC1 gene was identified and last year researchers found the second NPC gene.
With these important discoveries, hope that a treatment could be developed to slow or stop the damage caused by the accumulation of cholesterol increased. Today, plans are underway for the first clinical trial of a treatment. This new drug may be able to slow the damage of Niemann-Pick but it is not a cure. The two Foundations continue to focus their efforts on the research needed to find treatments.
We have written this letter to raise awareness about Niemann-Pick and the need for additional research funds. As we look forward to the holidays, we ask that you remember Adam and Amanda in your prayers and consider a donation to this cause.
Sincerely,
Doug and Janet Pease
Donations may be sent to:
National Niemann-Pick Disease Foundation
PO Box 310
Fort Atkinson, WI 53538
For more information about Niemann-Pick, visit the Foundation's website at http://www.nnpdf.org
