Hemophilia of Georgia's 40th Anniversary Celebration March 23, 2013

Speech by Trish Dominic, CEO

Good morning ladies and gentleman. I am Trish Dominic, the CEO of Hemophilia of Georgia and I want to thank you for coming to celebrate Hemophilia of Georgia's 40th Anniversary. You may have noticed the puzzle pieces on your table. We think that one of the things HoG has excelled at over the years is connections, connecting people to care, connecting people to fun activities and events and connecting people with resources to live normal productive lives. We would like all of you to enjoy a buffet lunch and then we will have a short program. After our program you are free to enjoy the aquarium. So let's eat lunch and I will return at 12:15 to start the party.

I would like to start our program today by recognizing the people in this room who have contributed to HoG's success over the past 40 years. At this time, I would like to have our clients and their families stand and receive a round of applause, you are the reason we are here today.

Next I would like to have anyone in this room who has volunteered (including our clients) or contributed to Hemophilia of Georgia to please stand and receive a round of applause for your generosity and for giving of your time and talents to help us be successful.

Now I would like to recognize treatment center staff including Chairs of Departments and researchers at the center. Please stand and let's give a round of applause for their dedication and commitment to providing high quality, specialized care that improve outcomes for people with a bleeding disorder.

Finally I would like all the staff and Board members of HoG to stand and be recognized for their vision and dedication to HoG's mission - Hemophilia of Georgia exists so that people affected by a bleeding disorder live as normally and productively as possible. Please stand for a round of applause.

And now I would have the honor and pleasure of presenting two special gifts. As I talk about the first person whom we are honoring today, Dr. Sid Stein, Professor of Hematology, at Emory University I think you will learn some things that have been a part of our HoG history.

Dr. Stein and I have worked together for almost 30 years. I met Dr. Stein in the early eighties. There was not much in Georgia beyond medicine for our clients.

Our treatment centers included an adult program at Medical College of Georgia with Dr. Larry Lutcher as Director and Dr. Eleanor Falin with a small program at Scottish Rite who early on would leave and be replaced by Dr. Betty Kurczynski. We were so fortunate to have an orthopedist at Scottish Rite in Dr. Michael Busch who is still with us and attends clinics at Emory/CHOA.

But we needed an adult program for the Atlanta area and we needed to build a program at a place like an Emory University that would provide us with referral resources for our clients and the capacity to build research for the future. And we found Dr. Stein who agreed to get involved, start a program and not long after Dr. Beverly Bell would join his work as a pediatric hematologist.

One day I had a call from Dr. Stein. Dr. Stein came over for a meeting with the Board to tell us that no patients were coming to Emory. People did not seem to believe that they needed to attend a comprehensive care center. He thought we needed to hire some outreach nurses, to bring our clients into the centers. HoG started with two outreach nurses to go to the client's homes, be a part of the team at the center and do what was needed by the team for follow up with the client. Today our outreach staff includes 7 nurses and 3 social workers plus a Social Work supervisor and a quality assurance nurse. We are the only bleeding disorder program in the country that has a public health outreach combined with a specialized system of care.

One day I had a call from Dr. Stein. He suggested we invite all the companies who manufactured clotting factor products to come and present their products to us in preparation of issuing our annual bid. At that time there were about three companies to meet with and it was at a time when almost on a weekly basis lot numbers of products were being withdrawn from pharmacy shelves and patient homes due to a donor having been identified with HIV. He asked that we include New York Blood Center who had manufactured a solvent detergent product. Dr. Stein had been reviewing their data and believed that the solvent detergent process killed both HIV and Hepatitis C. The New York Blood Center manufactured 11 million units of product that year and HoG bought 9 million units. We were one of the few states who had access to clotting factor that year because of recalls by the other manufacturers. Any child who was born that year and received product from HoG was safe from both viruses because we continued to buy this product until the advent of the monoclonal products and eventually recombinant products.

Dr. Stein was a reviewer of the first Hemophilia Handbook that is now available on line and helped author our Protocols for the Treatment of Hemophilia and VWD that now appear on the World Federation of Hemophilia's website.

One day I had a call from Dr. Stein suggesting we apply for a CDC/MCHB grant to become a regional core center and provide technical assistance and leadership to treatment Centers in the southeast. Dr. Stein would serve as the first regional medical director for Region IV South a region that today serves 8 states and 22 hemophilia programs.

In 2003, the Board recognized that physician researchers in hematology were leaving hematology for careers in oncology. They wanted to keep these physician researchers involved in hemophilia care and treatment. The agency created such a program and funded three junior researchers that year, Dr. Paul Monahan, University of North Carolina Chapel Hill, Dr. Mark Redding at the University of Minnesota and Dr. Suchita Acharaya, who started her career at Cornell but is now at Long Island Jewish Hospital. Almost ten years later, our first junior researchers are medical directors of their treatment centers. Dr. Stein agreed to serve as one of the reviewers of these research proposals. As of 2013, HoG has funded 8 junior researchers including Dr. Amy Dunn and Dr. Shannon Meeks at Emory/CHOA.

Today Emory CHOA program serves over 800 people with a bleeding disorder. One of the largest programs in the US, it is considered a leader in the care and treatment for people with a bleeding disorder.  Their physicians and nurses help staff our Medical Lodge at camp and Camp Wannaklot is the largest single state camp for people with bleeding disorders in the US. HoG has funded a Research Chair in Hemostasis at the Emory/Choa program currently filled by Dr. Pete Lollar.  We have funded a Director's Chair in Hemostasis in pediatrics, first filled by Dr. Tom Abshire and now Dr. Shawn Jobe. And we have funded a Professorship in Hemostasis, currently filled by Dr. Christine Kempton.

This past year we funded two genetic research projects. One in Factor IX gene therapy at St. Jude Children's Hospital and a Factor VIII Gene Therapy project at Emory/CHOA under the direction of Drs. Chris Doering and Trent Spencer.

Today we honor the person who said yes, almost 30 years ago and who forever changed the lives of people with bleeding disorders far beyond the state of Georgia. Today in his honor we endow the Sidney F. Stein Chair in Hemophilia and Hemostasis at Emory University and will provide funding for the Adult Hematology Fellowship program over the next three years. Dr. Sid Stein will you please come forward and accept a gift for contributing so much to our success and our celebration today.

Now I always say that beside every good man is a great woman. Throughout our years at Emory/CHOA - there has been such a woman. She is the Associate Director at Emory, Pam Bryant. She has worked tirelessly over the years to ensure that our clients receive timely care and treatment, referrals to much needed resources and helped the team at Emory with endless projects, grants, data and problems. She has been a great leader and friend for the staff at HoG. It is truly an honor to recognize her for her work, dedication and commitment. Pam - please come forward - we have a gift for you.

Before I introduce our next speaker, I would like to remind you that April 17th is World Hemophilia Day. 75% of the people in this world with a bleeding disorder have no access to care or treatment. HoG has been involved in Twinning projects with the World Federation and continues to ship donated clotting factor products to countries throughout the world. We in Georgia have been very fortunate to have what we have. I would like to ask you today to go to the World Federation's website and make a contribution in honor of HoG's 40th Anniversary. Thank you.

Now I would like to introduce Vic McCarty, Director of Development, for HoG who will be presenting our final awards for today. Vic has been with us for over 10 years first as our camp director and then Development Director. Everyone knows Vic; he runs our walks, our Hit 'Em for Hemophilia Golf Tournament and solicits you for support for camp and research. This is Vic's last day at HoG, although he has agreed to be at our walk in Augusta. We are sad that he is leaving but delighted to learn that he will be working for Camp Kudzu and children with Diabetes. I would like to give a big round of applause for the years he gave to hemophilia and to wish him continued success in his career.