Susan McGuire, North Carolina

Susan joined us in 1998 as Director of Public Relations.

I am an office administrator for a general dentist and have worked 17 years for the practice. My husband Brian and I have been married for 26 years and we have two grown children, Patrick and Justin. I enjoy travel, reading, sewing and music. I play in our church’s adult handbell choir and direct a youth handbell choir.

I became involved with VHL Family Alliance after watching the dedication of my sister-in-law Peggy M. and brother Don to the organization. I felt there was a vast amount of beneficial information and work being done by the folks in the VHLFA. I had a sketchy knowledge of VHL as our family has known of the disease since Peggy’s diagnosis in the 1960’s. The more I learned about VHL the more questions I had about its diagnosis, prognosis and treatment. VHL has impacted several people very special to me, and as I met other people with VHL and their family members I knew I would like to help out in anyway VHLFA could use me.

I graduated in 1991 from NC State University with a Bachelors Degree in Communications and Public Relations. I always thought I could use my education to volunteer with a non-profit organization, as I was not prepared to make a career change after working several years in the dental field.

When Brian and I visited Don and Peggy we were amazed at the amount of materials and resources that were available to people concerned with VHL. We talked about different public relations programs and what might be done in the future. If any of you know Peggy, she never seizes to grab an opportunity to recruit new volunteers and I was asked if I would consider helping on the Public Relations committee. I have not regretted for one moment saying yes.

Last year was my first attendance at a National VHL meeting and I met many new friends and learned new information about VHL and its manifestations. As a lay person, I had a crash course in medical terminology. In the past year I attended the National Organization for Rare Diseases (NORD) conference and Alliance for Genetic Support Groups (AGSG) conference. I have compared and shared information with other non-profit groups and have in returned learned ways to help us get our message out to the public. I currently chair the Public Relations committee and I hope to help VHLFA make great strides in reaching the print and broadcast media. Jay Platt’s hike was a national media event and with the help of Maria from PA , her friend Lou, and many others Jay was able to get local and national press. Joyce Graff was our eyes and ears as we followed Jay on the Appalachian Trail from our computers. It has been both challenging and exciting to work this year in on projects for VHLFA.

I feel very privileged to be a part of the VHLFA and its wonderful group of caring and giving people. We are all working toward a very informative and successful National VHL meeting June 4-6 in Atlanta. I hope to meet many of you there.

As printed in the VHL Family Forum 7:1, March 1999.  For permission to reprint, please contact VHL Family Alliance, info@vhl.org.

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