Robert Long Legacy
When Robert Long (April 4, 1927 – January 14, 2021) started the Hemophilia Center of Western New York in 1969, he had a dream of a better life for each person affected by bleeding disorders. His vision didn’t just include patients, but their families too. Treatment for bleeding disorders has evolved significantly throughout the last few decades and Robert was able to see it all. He remained passionate about ensuring the best treatment for every patient and their families at the center.
He assembled a Board of Directors, many of whom were parents of known patients, Dr. Alfred Stein, a local hematologist, and others. He secured office space and a treatment room at the E.J. Meyer Memorial Hospital, hired Kamal Tourbaf, MD as medical director, an Executive Director and a Nurse Coordinator. He worked with Dr. Tourbaf to acquire an orthopedic consultant, a physical therapist, and a dentist to provide comprehensive care for the patients in the early years. He worked tirelessly through the years. As Chairman of the Board, he was available to staff as needed, 24/7.
Mary Haggerty, Board member and mother of a patient, moved to Buffalo from Indianapolis in 1981. “Shortly after we established ourselves as clients at the center (our youngest son, Patrick, has severe hemophilia 8), we heard the name “Mr. Long” from the nurses at Children’s [Hospital] and at the adult site at ECMC when we went on home infusion,” reflects Mary. Several mothers of boys with hemophilia started to meet and planned a picnic for the families. That is where her family was first introduced to members of the BOD and the rest of the staff. Later they planned dinners for the 20th or 25th anniversary of the Center. It was at one of those dinners that she learned from one of the other guests – the impetus for founding the Center came from a personal tragedy Long and his family endured. “In all my years on the BOD (and in my husband’s years serving before me) neither of us recall him ever speaking of it, but clearly it became a life-long mission to make sure it did not happen to another family,” said Mary.
If you have ever read the book Journey, by Robert and Suzanne Massie, or if you recall Ryan White’s story, you will get a feel for how desperate parents of children with hemophilia were and how much Robert Long’s work to build a Hemophilia Center has impacted families in WNY. He rarely spoke in front of BOD meetings outside of agenda items, but Mary got the sense that he was a very focused individual and, fortunately for the hemophilia community, one of his foci was developing a Hemophilia Center to coordinate and enhance the care and treatment of benign bleeding disorders. “His life is an extraordinary example of how to use one’s gifts and talents for others.”
Board member Marcia Gellin was a Maternal and Pediatric Nurse Educator at the college level. She was interested in becoming involved with a Community Board of Directors which focused on children and adolescents with a chronic illness. She applied to the Hemophilia Center of Western New York for a position on their Board of Directors. She met Mr. Robert Long and became a member of the Board of Directors in the Fall of 1992. “From the day I met Mr. Long, I was impressed with his dedication and sincere focus on all aspects of the Hemophilia Center. Mr. Long was very interested in every BOD meeting agenda, and the accomplishments that his staff and BOD members accumulated over the years. I had known Mr. Long for decades, until his recent passing. His focus on benign blood clotting and bleeding disorders and the growth of the Hemophilia Center over the years has been a tremendous accomplishment,” remembers Marcia. “Mr. Long has had a lifelong impact on my knowledge and dedication to WNY BloodCare Inc. (formerly the Hemophilia Center of Western New York), as well as my continuing [to serve] on the BOD”, said Marcia. It was important to Mr. Long and to all of the BOD members that advances in treatment and providing factor for all patients who needed it was provided by the excellent staff of nurses and physicians at the Center. “Mr. Long’s dedication, hard work and strong focus motivated the Center to provide excellent care for all patients with bleeding disorders. This hard working and generous man devoted his life to helping others who needed his strength, support and encouragement”, said Marcia. “He is an example to all of how one person can change the world and make it better for so many individuals and families!”
Linda Belling, RN-BC, MS, CRRN, and longtime nurse at Center first met Robert Long in 1977 when she interviewed for the nurse coordinator position at the HCWNY. Linda became a key care provider until she retired from the Center after 43 years on 4-1-19.
Robert Long had a total understanding of what the patients with bleeding disorders needed in WNY. He was able to organize and maintain a private, non-profit HTC. “Many Buffalo patients with bleeding disorders went to Rochester for care before our HTC opened. I believe we were the second HTC in the US to start out as a private HTC,” said Linda. Mary M. Gooley, Executive Director of the Rochester Hemophilia Center, started the first private, non-profit HTC in Rochester, NY in 1959, and he sought her help in starting the same in Buffalo for our patients.
Linda reflects that, “When I started my position the extent of Mr. Long’s involvement with the HTC became very clear. He worked with the local insurance companies in WNY to establish reimbursement for services that were fair and customized for the unique comprehensive care we provided.” Comprehensive care was just being recognized for people with bleeding disorders in the early 1970’s. When the HTC opened in 1969, factor was bought directly from pharmaceutical companies, which led to our HTC starting a home therapy program in 1972 unlike other HTC’s in the US that were divisions of a hospital hematology department without the ability to provide factor easily to patients for home infusion.
Mr. Long was supportive in moving forward with other endeavors, such as supporting the medical staff and making the decision to add treatment for Gaucher Disease and Hemochromatosis. “When attending national and international hemophilia meetings, I was always proud of the services and programs we offered to our patients at our HTC. Our reputation preceded us,” said Linda, “He remained proud of the center, now Western New York BloodCare, and was excited to see what new treatments meant for each patient at the center. Robert’s son, Thomas Long, has followed in his footsteps and is the current Thomas Long is the president of the board of directors, and his granddaughter Ashley Long, is the secretary for the board of directors. They plan on carrying on Robert’s vision and ensuring the best treatment for every patient and their family at Western New York BloodCare.”
Mr. Long, who also owned Specific Solutions, will be remembered as a fair, calm, forward thinking Chairman of the Board and visionary. “Mr. Long provided me the opportunity to further develop the vision he started decades ago. His dedication and support of the work we did inspired us all to expand our outreach,” says Laurie Reiger, Executive Director of WNY BloodCare. He was instrumental in providing a foundation for the organization and then was a continuous presence for success and improvement in the care of the patients with bleeding disorders in the WNY area. He will be missed but his accomplishments will never be forgotten.