Support Network

CSN Thanks Committee Members
By Kris Hopkins

In March 2001, members of the CFIDS Support Network (CSN) will elect five new support group leaders to serve on the CSN Advisory Committee (CSNAC). Committee members advise the Association on the operation, direction, and goals of CSN, working together to direct attention to and develop solutions for challenging issues identified within the support group community.

As we welcome new committee members, we want to extend our heart-felt appreciation to our outgoing committee members, an outstanding group of individuals who serve the CFIDS community in many extraordinary ways:

Priscilla deLeon, a CFIDS patient cofounder/coleader of The CFS Association of the Lehigh Valley in Pa., has been an anchor for CSNAC since its formation in 1995 and is completing her third two-year term on CSNAC. Under her leadership, her support group increased physician and public education through participation in local and national CFIDS conferences and Awareness Day activities. Priscilla also served on The CFIDS Association’s Board of Directors from January 1995 to November 2000.

Susan DiPasquale is a person with CFIDS (PWC) and support group leader elected to CSNAC in 1999. Formerly a nurse, Susan is a CFIDS lifeline for many patients. She leads a 150-member support group, operates a CFIDS “help line,” and networks with patients worldwide via the Internet. She has been featured in the media for her CFIDS advocacy work and has received numerous awards for her community and physician education work. Susan is currently earning a degree in social work.

Christina Huebschman, support group leader of the Gulf Coast Support Network in Pensacola, Fla., was elected to CSNAC in 1999. Her support group serves members with CFIDS, fibromyalgia (FM), multiple chemical sensitivities, and Gulf War illnesses. A nurse prior to becoming ill, she has had the unique opportunity to see both sides of the CFIDS experience—patient and health care professional. Christina’s strengths lie in the areas of advocacy and education for CFIDS patients.

Marion Nelson is a charter member of CSNAC, having served since 1995 as President of the Manasota CFIDS Support Group for more than nine years before stepping down in 1999. Marion, a CFIDS patient, and her husband, Phil, a physician, are active in local and national advocacy efforts. Attending Lobby Dayin May 1995 helped Marion understand the importance of grassroots efforts.

Sarah Shepherd was elected as a CSNAC member in 1999. Since 1993, Sarah has been involved with the Central Virginia CFS and FM Association, Inc. She is editor of their quarterly newsletter and became president in 1998. Sarah, a CFIDS patient, is dedicated to educating health care professionals about CFS/ FM. She has lectured and written articles on CFIDS, designed displays for local exhibits, and attended national and local research conferences.

Jon Sterling was elected to CSNAC in 1997. He is the new Chairman of The CFIDS Association of America and former president of the New Jersey CFS Association, where he worked to organize and operate patient support groups in 10 counties, developed a support group leader training workshop, and established a lending library, phone list, and hot line for homebound patients. He was instrumental in gaining passage of a CFS bill that directed the state’s Department of Health and Senior Services to establish medical education and public awareness programs on CFIDS and appropriated $95,000 for a physician’s manual on diagnosis, treatment, and patient care.

Kris Hopkins is the Support Network Services Director for The CFIDS Association of America.