Board Member Bios
Edward J. Kuebler
Ed Kuebler is a social worker at the University of Texas Gulf States Hemophilia and Thrombophilia Center. Over the past twelve years he has worked with the center's clinical team to provide comprehensive care to patients with bleeding and clotting disorders. Ed also co-directs the center's annual educational retreat for women with bleeding and clotting disorders and the Texas Summer Camp Leadership Program for males with bleeding disorders.
As a member of the World Federation of Hemophilia Psychosocial Working Group and the local chapter, Ed donates much of his time to the care of patients with bleeding disorders. Ed published an abstract, Transition of Males with Hemophilia from Boys to Men, at the 2002 World Federation of Hemophilia World Conference. He also chaired the National Parents Empowering Parents (PEP) from 2002-2008, an innovative peer-to-peer skills program that introduces parents to the tools they need to handle the realities of raising a child with a bleeding disorder. Ed has taught national and international trainings and local PEP programs multiple times.
Ed earned a Master of Social Work (MSW) from The University of Houston at University Park, Texas, and a Bachelor of Science degree in Psychology and Sociology from The State University of New York at Brockport, New York. He lives in Houston, Texas.
Dr. Pia Petrini
Dr. Pia Petrini is an associate professor in the pediatrics department of blood coagulations disorders at the Karolinska University Hospital in Stockholm, Sweden. She has built up an outstanding centre for children with hemophilia and thrombosis, has devoted her research to preventing disablement from joint bleedings and has a world-wide reputation for this work.
Dr. Petrini is an active member of the International Society on Thrombosis and Haemostasis, American Society of Hematology, Ped Net, a pediatric network of haemophilia care, and the International Prophylaxis Study Group (ISPG).
Dr. Petrini received her medical degree from the Karolinska Institute in Stockholm, Sweden. She is married with three children and lives in Vallentuna, Sweden.
Tessa Speller, RN RSCN
Tessa Speller is a clinical nurse consultant, former hemophilia nurse specialist and the inventor of BayCuff, a self-infusion training cuff for first-timers available globally through Bayer HealthCare. Tessa has extensive experience with adolescents and young adults with hemophilia, having worked for ten years as a clinical nurse specialist and participated in a variety of hemophilia studies and groups.
In 2004, Tessa was the Founder and inaugural Chair person of an international Paediatric Nurses Group, addressing the uniqueness of paediatric/adolescent issues amongst the bleeding disorder community globally.
She was also the Chairperson for the World Federation of Hemophilia's Multidisciplinary Session in Bangkok, Thailand.
In 1999, Tessa presented as a co-investigator the results of a study on the clinical effectiveness and quality of life for hemophilia patients using certain products at the Hemophilia Conference in Australia. Tessa lives in Melbourne, Australia.
Diego Gavidia
Diego Gavidia is currently the vice president of his local society of hemophilia. He became involved with his local hemophilia community after attending the first camp for young people with hemophilia in Peru, four years ago, and has participated in the organization ever since. In 2009, he participated in the Step Up Reach Out program for young leaders of international hemophilia communities and participated in the Texas Summer Camp Leadership Program to further his organization and team building skills.
In November 2009, Diego participated as an official delegate in a Latino American Hemophilia meeting, sharing ideas and goals with people of from other countries. Through his work with the Peruvian Society of Hemophilia, he is dedicated to getting better treatment for people with bleeding disorders in his country, since there is not an adequate supply of factor for most people.
He is currently studying advertising at the Pontificia Universidad Catolica del Peru in Lima, Peru. In the near future, would like to start his own company. Diego lives in Lima, Peru.
Eviatar Weizman
Eviatar Weizman participated in the Step Up Reach Out training program for young leaders of international hemophilia communities in 2009. The program made him realize the importance of being more involved with the local hemophilia community in his native country, Israel.
The issue of the complementary military service and young hemophiliacs has his special attention. He enrolled in the army fulfilling his compulsory military duty.
Eviatar's motto is "hemophilia has to live with me, not the other way around.” Eviatar loves life, sports, music, movies and most of all, traveling. He has traveled extensively across Europe, including a month of trekking in the Spanish Pyrenees, and dreams of climbing Mt. Everest.
Back on solid ground, Eviatar plans to study medicine. Eviatar lives in Israel.
Advisory Council
Miguel A. Escobar, MD
Dr. Miguel A. Escobar is an associate professor of medicine and pediatrics at the University of Texas Health Science Center and medical director of the Gulf States Hemophilia and Thrombophilia Center in Houston. He is actively involved in basic and clinical research that focuses on hemophilia, other coagulation factor deficiencies, thrombosis and HIV.
Dr. Escobar has published numerous journal articles, book chapters, and abstracts on hematologic topics.
Dr. Escobar received his medical degree from the Universidad Libre School of Medicine in Cali, Colombia, and was the valedictorian of his class. He specialized in internal medicine at the University of Connecticut followed by a fellowship in hematology/oncology from the University of North Carolina at Chapel Hill. He lives in Houston, Texas.
Radoslaw (Roy) Kaczmarek
Radoslaw (Roy) Kaczmarek is a chapter board member of the Polish Hemophilia Society. In March 2009, he participated as an official delegate in an international European Hemophilia Consortium conference on the delivery of hemophilia care in Central and Eastern Europe. In 2008, he participated in the Step Up Reach Out training program for young leaders of international hemophilia communities.
He has severe hemophilia A and is a strong advocate of physical activity, in particular controlled resistance training. In August 2008, Roy won a silver medal in the Wroclaw Swimming Championships, and in 2005, he finished a 3.1-mile running competition despite suffering from severe arthropathy in his knees.
He received his Master of Science degree in Biotechnology at the University of Wroclaw in Poland and is currently pursuing his PhD at the Institute of Immunology. He loves movies and cooking which he finds similar to working in a laboratory. Roy lives in Wroclaw, Poland.
Juan Ramón Olmos Sánchez
Juan Ramón Olmos Sánchez became involved with his local hemophilia community after attending the Step Up Reach Out course, an international youth leadership program for young hemophiliacs worldwide. He now works as a sub-delegate for his regional hemophilia association in Granada.
Juan, whose grandfather had hemophilia A, was diagnosed with the condition soon after he was born. He has written and published hemophilia-related articles to help people in his country understand the nature of the disease and currently works as a freelance sports writer for the newspaper, Granada Hoy.