Our Family Tree, Rooted In Hemophilia Advocacy

My Mother had two brothers who died due to unstoppable bleeding—Charles, who died at age 7 in 1927, and Alfred, who died the following year at age 27. I was the oldest of six children. My two brothers, Bill, born in 1947 and Tommy, born in 1951, both had hemophilia. Three of my nephews, two of my cousins, and my grandson have all been diagnosed with hemophilia since then.

While I don’t have hemophilia myself, I have had my own “Journey” with the disease. I’ve watched the evolution of treatment from the 1950s to now. The only treatment back then was blood plasma delivered intravenously to stop the bleeding—particularly in the joints, resulting in permanent disability and excruciating pain for so many patients.

My father, Dr. Mario V. Bisordi, was a wonderful physician who treated all the hemophiliacs in the Westchester area. The book “Journey” by Robert and Suzanne Massie is a poignant story of their son’s life with hemophilia. They mention my father in their book, as they describe how he cared for their son and the challenges that many patients faced in those years.

My father took a course in hypnosis to try to stop the pain of the boys and met Paul Winchell, a famous ventriloquist and tv personality in 1957. He and Paul patented a plasma defroster in 1963. Paul had my brother Tommy on his show twice, where they educated viewers and asked for their support. The Tommy Fund brought in generous donations from all over the country.

Closer to home, my family started the Westchester Hemophilia Chapter in the 1970s and hosted annual fundraisers through the early 2000s, thanks to the support of our generous friends. All of the funds raised—more than $1 million in just over thirty years— went directly to research into new treatments and investigating a cure.

Our family is much larger now—with our children having children of their own. When my daughter Jennifer’s son, Jack, was born with hemophilia, I was worried. Watching my brothers struggle with the disease as we grew up, I worried that Jack might face similar challenges. But at just 11 years old, he’s not only running with his cross- country team—he’s winning races. It’s a powerful reminder of how far treatment has come in this community.

In 2022, my family started hosting golf tournaments again in Westchester. This summer, with the help of my daughter, Jennifer, we came together for a Golf Outing and Dinner at Knollwood Country Club. Nearly 100 golfers—including many old friends, and some new ones—joined us as we raised more than $105,000 to support the New York City Hemophilia Chapter.

Through the generosity of caring people around the world who have continued to support research, the treatment has come a long way-from early deaths, debilitating illness, painful long IV treatments, and the HIV epidemic, to the new treatments now that work better, last longer, are delivered via subcutaneous injections, and more.

While things have improved dramatically for so many with bleeding disorders, and while the future looks bright for Jack and other hemophiliacs his age, our ultimate goal of finding a cure remains. It is through the continuous heartwarming generosity that we will succeed in the near future.