top of page

OUR MISSION & HISTORY

Our mission at THBDF is to enhance the lives of those affected by bleeding disorders. We were founded with the goal of providing support and resources to those in need, and to raise awareness about these conditions. Our team is made up of dedicated professionals and volunteers who are passionate about making a difference in the lives of others. We believe that everyone deserves access to quality healthcare and the opportunity to live a full and healthy life. Join us in our mission to make a difference.

 

Our history can be best said by our late Dr. Jan van Eys in an article he wrote in 2020.

A Look Back - The Birth and Infancy of the THBDF

 

Medicine is an ancient art. Patients have sought help from healers and barbers (primitive surgeons) for all of recorded history. The healers, now called physicians, did the best they could with the tools and knowledge available to them. To be a physician was to be in a highly respected profession. But at all times, to seek help from a physician put the patient at the mercy of the physician: patient autonomy did not become a desired goal until the late 1960s. 

When the disease for which help was sought was rare, the patients often knew more about the natural history, even though they might not be knowledgeable about all the treatments available. But that held true also for lower level clinicians and trainees in medical centers. Private practitioners were certainly not up to date. 

The result was long waits while the practitioners looked up the data needed to serve their patient with a rare disorder. Even then, sometimes the care was inadequate or outdated. 

Hemophilia was a classic example. In 1968 I was a pediatric hematologist on the Vanderbilt faculty. My adult counterpart was Dr. John Flexner. We called our hemophilia patients and/or their parents together in 1969 to organize a patient group, which was officially incorporated in 1970 as the Cumberland Chapter of the National Hemophilia Foundation (NHF). It covered all of East and Middle Tennessee up to the Tennessee River.  

 

Dr. Flexner stayed interested but not actively involved in the chapter. However, he was very instrumental in keeping Vanderbilt interested in hemophilia care. He managed to recruit Dr. Arthur Brooks, an orthopedic surgeon at Vanderbilt, to become involved in hemophilia rehabilitation. 

 

The first chair of the new chapter was Lee Whitehurst. He was chief engineer at WSM TV. He and his wife Scottie had two sons with severe Hemophilia A. Through his position at WSM, Lee had many contacts. He even managed to recruit sponsors and spoke-persons of fame: Porter Wagoner and his new “canary,” Dolly Parton! We also had a board with civic leaders.  An example was Judge Benson Trimble [pictured here in the middle], who could help open doors to the Nashville political establishment and the elite. 

 

Under Lee Whitehurst’s leadership, the chapter had several major accomplishments: 

  1. Under his guidance sound bylaws were create and election procedures were established. 

  2. A hemophilia clinic was established at Vanderbilt. Having a dedicated clinic made comprehensive care possible. This clinic later became the start of the comprehensive hemophilia center of today. The clinic was decorated with original oil paintings by Clarence Rowland, a charter member of the chapter. 

  3. The chapter managed to have the Tennessee State Legislature pass a law supporting hemophilia care. At our request a model law was written by Douglas Henry in 1970. At that time Douglas Henry was a practicing lawyer. He had been a Tennessee state representative. Later on that year he was elected a State Senator, a post he held for decades. He always supported the chapter faithfully up until his death. The law was sponsored by Senator Avon Williams, of Nashville integration fame. The law was signed by Governor Buford Ellington. 

  4. The chapter promoted, and helped have Vanderbilt accept, the concept of self-infusion by patients. Just about that time cryoprecipitate became generally available as the first concentrate of Factor VIII. Storage required ultra-low temperatures. Lee Whitehurst and colleagues at WSM developed a home freezer that was capable of storing cryoprecipitate at home. It was low cost and low maintenance. The design was not patented, but published in the Journal of the Tennessee Academy of Sciences, so it was freely available to all. 

  5. Fundraising became a necessity. My late wife, Catherine, suggested the Royal Gala, which is still the model today for our main fundraising event. 

 

The THBDF had a strong start. Much has happened since that time. We merged with the Memphis chapter, changed affiliation from the NHF to the Hemophilia Federation of America (HFA). We began sponsoring Camp Freedom.  

We should never forget our start and the persons who worked hard to make us viable and effective. And above all we should never become complacent. 

PROUD  MEMBERS OF

At THBDF, we are proud members with a wide range of organizations and individuals who share our commitment to enhancing the lives of those affected by bleeding disorders. Our partners include healthcare providers, patient advocacy groups, and other non-profit organizations. Together, we work to provide support and resources to those in need, and to raise awareness about these conditions. We believe that by working together, we can make a greater impact and improve the lives of those we serve.

HFA_logo_5_nowords.jpg
de9377_7884549de1e34f75a11c64fe6a9380c6~mv2.webp
bottom of page