Having a child
diagnosed with cystic fibrosis can be a very overwhelming and emotional
event. Becoming educated about CF and obtaining support can be very
helpful and empowering. We here at the Cystic Fibrosis Association of Erie County support and help with directing you to the appropriate
services and resources. If you live in Erie or Crawford County, Pa., and have a child that
has recently been diagnosed with CF, you can contact us here.
Guidelines of Clinical Care CF Newborns to 5 Years Old for families that have just had a CF diagnosis is available from the Cystic Fibrosis Foundation.
There are four CF clinics within a 2- to 3-hour drive of Erie and Crawford County, Pennsylvania. The pediatric clinics include:
Whether your child can participate in normal activities depends on various factors. In general, CF patients without significant health issues can participate in normal physical activities and are encouraged to do so. It may be more difficult for some children to participate if they are experiencing respiratory or other health problems. You should always discuss these issues with your CF specialist.
The CFA helps individuals/families living in Erie and Crawford County, Pennsylvania, who are diagnosed with CF for medical-related expenses not covered by other programs. These reimbursements are referred to as direct dollar disbursements ("DDD") and must meet the requirements of our Association's guidelines.
Financial reimbursements may be provided for travel for clinic visits, non-prescription, supplements, co-pays, and other related expenses not covered by insurance that are CF related such as over the counter medications, co-pays etc.
In order to qualify for reimbursement from the CFA of Erie County, you must be a registered resident of and living in Erie or Crawford County, Pennsylvania and be diagnosed with cystic fibrosis. There are no financial requirements for reimbursement.
Currently, there are no family or individual CF support groups that meet on a regular basis. We at the CFA are here to help in anyway possible, so please reach out to us here. In addition, there are numerous online support groups for patients and their families.
The Cystic Fibrosis Association of Erie County does not have a physical office since it is operated entirely by volunteers. The best way to contact a board member about a specific issue is through emailing them individually here or sending a general question through our contact page here.
There are several ways in which the general public can donate to the Association. Donations can be made online through PayPal directly on the CFA website. If you prefer to donate by check, write a check payable to Cystic Fibrosis Association of Erie County. Please mail your check to CFA of Erie County, PO Box 11405, Erie, PA 16514.