Barbara Vorpahl
Fort Atkinson, WI
Advocate
Charity: National Neimann-Pick Disease Foundation
It is every parent’s worst nightmare, "Your child has a rare terminal disease with no treatment or cure. Take her home and love her." Despite this devastating news, Barb Vorpahl not only lovingly cared for her daughter, Stacey, until her death from Niemann-Pick Disease (NPD) at age 19, but she persevered over the years and applied lessons learned to help found and establish the only patient support, education, advocacy & research group in the United States for NPD.
Due to Barb’s diligent efforts the past 21 years, when a family now receives this tragic diagnosis they are referred to the National Niemann-Pick Disease Foundation (NNPDF), of which Barb currently acts as the Board Chair in a volunteer capacity. The NNPDF, a non-profit agency with foundation headquarters operating from Fort Atkinson, WI, offers services free of charge to families with a loved one diagnosed with this rare terminal disease.
Under Barb’s leadership, the NNPDF (www.nnpdf.org) just celebrated its 15th Anniversary and is truly a life-line of support to NPD family membership in the US & Internationally. Foundation services have grown and now include newsletters, educational materials/videos, medical referrals, genetic counseling, an annual family support & medical conference, as well as, funding for research & scientific fellowships.
Barb inspires all who know her with her perseverance to create a living legacy to Stacey and to ensure that today, well lived, makes every yesterday a dream of happiness and every tomorrow a vision of hope.
http://www.nnpdf.org/documents/NPSPRINGnewsletterfinal0407.pdf
