What is Pennsylvania Cystic Fibrosis. Inc. (PACFI)?
Pennsylvania Cystic Fibrosis, Inc. (PACFI) was founded in Mifflinburg, PA in 1985 by Bob Derr. He and his then wife, Donna, had a son, Burke, who was diagnosed with CF in 1978 about five months after he was born. Derr ran several fundraisers in support of the national Cystic Fibrosis Foundation’s research efforts, but he noted that none of the funds were used to provide financial assistance to Pennsylvania individuals and families who were affected by the disease.
Consequently, Derr organized a meeting of three other families who either had a child or children with CF or who had an interest in helping those with CF. The group agreed that PACFI should be formed as an independent, nonprofit, all volunteer 501(c)(3) organization that would help individuals and families affected by CF and, if funds were available each year, fund CF research.
Charter members in 1985 were the Derr’s, Butch and Karen Woolsey, Ron and Pat Girton, and Mike and Pauline Streett.
PACFI has been instrumental in providing assistance to individuals and families in Pennsylvania and in funding progressive research, and that's the main focus. In addition, PACFI has a small national and international network of health professionals, individuals with CF, families and friends and the organization has served as a resource in helping those from other states find needed information. PACFI partnered with CF Worldwide to help raise funds to build CF Clinics in third world countries and to provide donated equipment and nutritional supplements to international patients at no cost to the organization.
PACFI is unique in being able to help individuals and families affected by CF in Pennsylvania, to fund good research, to help international patients through CF Worldwide and more recently through networking via the PACFI and Burke P. Bear Facebook pages.
Because PACFI has no paid staff, their administrative costs are consistently under 10% which means 90% or more of funds go to helping others or to funding research.
In providing financial assistance, air conditioners are a major need for most people with CF who live in PA because of the hot and humid summer season. Since 2001 when the Request for Assistance form was introduced, PACFI has purchased about 90 air conditioners via the Walmart web site and the air conditioner is sent to the Walmart store nearest to the person for pickup. Portable nebulizers are another major request, and the organization has honored 34 requests. In addition, 12 transplant fund requests were approved for $1000 each.
PACFI has also purchased educational books to distribute to those who go to one of the state's CF Centers and advocacy services are available for students who are having problems getting their educational needs met.
Although the financial assistance is mostly aimed at CF-related items such as equipment, medications, nutritional supplements, IV and oxygen supplies, stethoscopes, air purifiers, and transplant-related expenses not paid by insurance, PACFI has also annually approved scholarships up to $2000 per year, emergency requests for car repairs, generators, rent, electric, and heating bills, and other miscellaneous items.
In general, the organization limits their financial assistance to $1000 per person with CF annually (exceptions are the Education Awards and transplant fund donations) in an effort to help as many people as possible.
Please check out the Request for Assistance form and / or the Missy and Angela Woolsey Education Award form (scholarship) on our site.
Assistance
PACFI is committed to helping individuals and families affected by Cystic Fibrosis.
Frequently Asked Questions
Read our frequently asked questions to learn more about PACFI, Burke P. Bear, Burke's Tour, and the Million Dollar Bear Campaign.