In each issue of HemAware, we take a look at how local NHF chapters and associations are making a difference in their communities. In this issue, we talked with Michael Perigo, development director, and Debbie Ford, local Walk manager of Hemophilia of Indiana, about Jeanne White-Ginder’s involvement with their Hemophilia Walk.
It’s been 20 years since Ryan White died. Many people don’t know who he was. Can you explain who Ryan was and about the advocacy work of his mother, Jeanne White-Ginder?
Ryan White lived in Kokomo, Indiana. He had severe hemophilia A and contracted HIV through contaminated factor. He was diagnosed with AIDS in 1984, when he was 12. This was at the height of the US AIDS epidemic, and HIV/AIDS wasn’t understood very well. Ryan was banned from attending school. He and his family fought to overturn that ban. In the process, Ryan became a national figure for HIV/AIDS awareness. Ryan did a tremendous amount to educate the public about the myths and realities of HIV/AIDS. He died when he was 18. After his death, his mother, Jeanne White-Ginder, formed the Ryan White Foundation in 1992. She is still an active spokesperson for HIV/AIDS awareness.
What do their names mean in your community?
So much of the work of the Ryan White Foundation and Jeanne, in particular, has been to promote acceptance of people with HIV/AIDS. It’s only recently that Jeanne has begun to get involved with the bleeding disorders community. This is something she really cares about. She wants to engage the community on all levels: at the local level with chapters, at the national level and with industry.
Jeanne was the spokesperson for your Walk. What did this entail?
Jeanne gave us permission to use her likeness. We put her and Ryan’s picture on all our advertising and promotional materials, including some billboards. Our local talk radio station, WIBC, did an interview with her that aired twice a week before the event. She was also interviewed on our local NBC affiliate, WTHR. We wouldn’t have had that level of publicity had she not been involved.
What has her message been?
Jeanne spoke about Ryan having hemophilia and the difficulties with his treatment. She talked about the need for research and treatment. She also spoke about the need for women and young girls to be more aware of von Willebrand disease. She said everything we could have hoped for her to say about the bleeding disorders community.
This is your chapter’s second Hemophilia Walk, but the first with Jeanne as a spokesperson. What was the difference?
Jeanne enabled us to reach out beyond the bleeding disorders community and make contacts with other organizations, such as the Children’s Museum of Indianapolis, which has an exhibit on Ryan (see “Museum Features Ryan White,” HemAware May/June 2008, p. 16). With her involvement, we could step outside our regular sponsors and engage other constituents. I know she would love to go to other chapters, other walks and events to speak. The positive consequences of having Jeanne White-Ginder in-volved in our Walk will stay with us for a long time.