It takes more than medicine...

 

Our Year End Story

Published December 10, 2009

 

Horizons in Hemophilia, December 2009 

By Trish Dominic, CEO  

Despite the economy and the nation’s financial crisis, HoG continues to provide programs and services throughout Georgia

I am pleased to share with you HoG’s continued success for 2008/2009.  Through the dedication and commitment of HoG’s Board, staff and volunteers, the agency continued to serve more people with bleeding disorders while maintaining its programs and services. While we have faced many challenges with state funding, legislation and national health issues, we remain dedicated to our mission and vision and committed to the people in Georgia we serve.  Here are some of the highlights of our work this past fiscal year.

Clients Served

  • HoG served 1,408 clients with a bleeding disorder (a 5% increase over the previous year).
  • 88% of our clients had a face-to-face contact with a nurse or social worker.
  • Our nurses and social workers made 1,230 home visits, 1,393 clinic visits and had 1,672 contacts with clients via other settings (hospital, school, and workplace or HoG event).

Financial Achievements

  • $1,544,326 was spent to provide clotting factor for 58 uninsured clients.
  • Baxter Bio Science donated 728,801 units of product for 18 uninsured clients.
  • Bayer donated 44,652 units for two uninsured clients.
  • Our 26th annual Hit ’Em for Hemophilia golf tournament raised $312,000.

Research Accomplishments

  • The agency funded four junior researchers.  Three of our researchers (two of whom are no longer funded) are now Directors of Hemophilia Treatment Centers at the University of Minnesota, the University of North Carolina Chapel Hill, and the University of Texas Health Science Center.
  • Two of our junior researchers, Drs. Shannon Meeks and Amy Dunn, work with Dr. Pete Lollar at Emory.
  • Dr. Pete Lollar, our research chair at Emory, continues his work on inhibitors.
  • The agency also funded a research nurse for Dr. Jay Steinberg at Emory Midtown and a clinical trials coordinator at Emory/CHOA.

Programs and Services

  • 151 Children attended Camp Wannaklot, the largest single state camp for people with bleeding disorders in the U.S.
  • The agency funded four treatment center programs in the state.  These centers are Emory/CHOA, Medical College of Georgia (adults and pediatrics) and Backus Children’s Hospital.  The agency provided over $1,281,600 in funding to these four programs.
  • The agency hosted 22 client dinners and activities that included Family Camp, a Teen Retreat, and a Women’s retreat.
  • With the National Hemophilia Foundation’s support, 12 of our families enrolled in special programs at YMCAs to participate in fitness, wellness, aquatics and sporting programs.
  • Our Youth Leadership Initiative, Generation of Heroes, encouraged self-esteem, responsibility and leadership.  The agency chaperoned eight teens to two different youth conferences and worked with ten teens in the Camp Wannaklot Leaders in Training program.
  • The agency continued to receive grants from the Centers for Disease Control and Prevention and the Maternal and Child Health Bureau to serve as the Regional Core Center for Region IV South that includes the states of Georgia, Alabama, Florida and Mississippi. Ruth Brown, Vice President of Programs, became the Regional Director in 2009.
  • The agency served as a contract pharmacy for the University of South Florida, the University of North Carolina, Chapel Hill and the University of Miami.

Educational Programs

  • To raise legislative awareness about bleeding disorders and HoG’s funding for the uninsured clotting factor program, over 100 people attended Hemophilia Day at the state Capitol.  February 5, 2009 dawned cold and raw, but people with bleeding disorders arrived on the steps of the state Capitol for a rally and then went inside for face-to-face meetings with their state legislators.
  • Horizons in Hemophilia became an online publication.
  • The agency’s VWD Community Outreach Nurse exhibited in 12 conferences and participated in 12 health fairs and eight civic group events.  She reached over 37,000 people with information about VWD.
  • HoG nurses conducted 40 medical in-service presentations to 521 providers.
  • Our nurses conducted 122 school in-services for 521 educators in 49 different counties across Georgia.
  • The agency participated in the National Hemophilia Foundation’s Washington Days.  Four staff and eight client/volunteers met with congressional leaders in Washington on February 26, 2009.

Recognition and Awards

  • Our Quality Assurance Nurse, Rueleen Lavergne, was profiled in the Celebrating Nursing supplement to the Atlanta Journal-Constitution and was subsequently honored at a Nursing Excellence awards luncheon with nine other winners.
  • Ruth Brown, Vice President of Programs, received the prestigious Loras Goedken Outstanding Leadership Service Award at the National Hemophilia Foundation Annual Meeting in Denver. The award honors an individual for outstanding efforts to educate and create awareness about people with bleeding and clotting disorders.
  • In addition to Ruth’s award, the NHF recognized The VWD & Platelet Disorders Handbook for an Award of Distinction for Health Education Programs and the Camp Wannaklot newspaper for an Award of Distinction for Communications.

I can’t remember how many years I have written this article for this issue of the agency’s newsletter, but I can tell you it always brings with it a great sense of pride and accomplishment. This year in particular I am so pleased that we continue to thrive despite what is happening in the world around us.  When I think of success I think of the HoG staff, Board and volunteers, but I also think of all of you, the people we serve, and your support of HoG.  On behalf of the staff and Board, thank you for being a part of Hemophilia of Georgia.