Making a Difference: Coy White Summer 2008 | Justin Lindhorst

The late eighties and early nineties were turbulent times for those living with a bleeding disorder. Still reeling from the “hemophilia holocaust” of the eighties, ours was a community searching for answers amongst the manufacturers, government agencies and nonprofit groups we felt betrayed by.

Amidst this chaos, six men in Ohio came together. Angry, frustrated, frightened and determined to never let such a calamity occur again, the men decided that their population would best be served by an annual meeting. In the spring of 1992, these men hosted the First Annual Meeting of Hemophiliacs in Ohio (FAMOHIO). Through educational support, networking and sharing of personal stories the men hoped that a strong, vocal community could never again be the victim of such great tragedy.

This year FAMOHIO, Inc., which now stands for the Family Annual Meeting of Hemophiliacs in Ohio, is preparing for its sixteenth annual meeting. The organization can now boast to be the largest gathering of its kind in Ohio, perhaps even the entire Midwest. We recently caught up with current president and co-founder of FAMOHIO, Coy White to ask him a few questions about the past and future of the organization:

Justine Lindhorst (JL): Born amongst crisis, how has FAMOHIO evolved from those first initial meetings?

Coy White (CW): Our earliest years were very focused on the AIDS crisis. Our community was overwhelmed, many families ripped up. Our main goal was to try to assist with information and support. Our secondary goal was to be able to stick around for future challenges. We were not even sure if we would get beyond the first couple of years. We saw that FAMOHIO could serve the community best with an annual event. Our educational programs diversified with issues that changed from year to year. So while the issues may be different our goal of sharing information and support has stayed the same.

 

JL: Where do you see FAMOHIO in the future?

CW: Constantly evolving. Issues change over time and FAMOHIO will have to also. We have considered many directions with camps, other locations, and expanding beyond just education. It seems that FAMOHIO will probably stay focused on the issues that families in the bleeding disorder community need to talk about, even with the different methods and/or directions being considered.

 

JL: With five hemophilia chapters in the state of Ohio, what is the role of FAMOHIO?
CW: During those first couple of years, I believe there was concern with the role FAMOHIO would have with the chapters; especially with limited funding for so many events throughout the state of Ohio. I hope we have all come to realize that our annual meeting is simply an opportunity to bring all the chapters together to share. This may sound simplistic but it is the most comprehensive definition of what our meeting is: Community together with HTCs, chapters, pharmaceutical and homecare companies to share information.

 

JL: How do you think organizations like FAMOHIO have changed things for people with bleeding disorders?

CW: Different from the past, I believe people now feel there are resources available. We feel less isolated. There are places to get help. A person has access to others with similar challenges and questions. There is a feeling of community and hopefully less of the sense of being stranded or alone.

 

JL: In your involvement with FAMOHIO what has been the most rewarding?

CW: With the years of involvement one of the great rewards is seeing the very young establishing relationships with others dealing with similar issues and situations. Some of the kids may feel alone during the year but with this opportunity to be with others where they can speak openly is healthy and important.

 

Sixteen years after that initial spring meeting FAMOHIO continues to provide Ohioans with bleeding disorders a venue to learn, network and share common experiences. The impact this organization has made in Ohio is undeniable. Each year hundreds within the bleeding disorder community save the date, mark their calendars and commute to the state’s capital to take part in the meeting. Of the six men who founded FAMOHIO, four have passed away. The legacy of Tommy Burr, Tom Drake, Ira Gaffin and Darrell Hairston is embodied in FAMOHIO and is carried on by the many friends, loved ones and fellow members of the bleeding disorder community that they left behind. It is because of their dedication and vision, along with those that make the event possible today that Ohio is able to boast a more robust, educated and connected community.