DBA Family Meeting 2015- Another Memorable Year!
Oh… Camp Sunshine… we are so very grateful! Through the generosity and compassion of our friends at Camp Sunshine, DBA families and patients from around the world met in Casco, Maine from July 12-17, 2015. Our tenth family meeting was a huge success!
The week was filled with information, emotions, friendship, and hope. As the children were engaged in fun camp activities with the masses of yellow-shirted, amazing volunteers, parents and adult DBA patients attended educational seminars presented by experts in their fields. The week’s itinerary was full and informative. The DBAF is proud to host the family retreat and give our families and the doctors and researchers a chance to meet and collaborate. A big thank you to the following presenters (Additional presentations will be added as they are received.):
- Dr. Blanche Alter – Hematology 101/DBA 101
Alter – Hematology 101
Alter – DBA 101
- Dr. Hanna Gazda – DBA Gene Discovery
Gazda – DBA Genes Discovery 2013
- Dr. David Bodine – Where do we go from here?
Bodine – Where do we go from here?
- Dr. Adrianna Vlachos – In Vitro Fertilization and Preimplantation Genetic Diagnosis
Vlachos – IVF-PGD
- All Doctors – Question & Answer Sessions
- Dr. Adrianna Vlachos & Eva Atsidaftos – DBAR Information
- Dr. Adrianna Vlachos – Introduction to DBA and Its Treatment
Vlachos – Introduction to DBA and Its Treatment
- Dr. Angela Smith – Hematopoietic Stem Cell Transplant
Smith – Hematopoietic Stem Cell Transplant
- Dr. Adrianna Vlachos – Update on Clinical Trials
- Dr. Joelle LaClair – Complementary Medicine
LaClair – Complementary and Alternative Medicine
- All Doctors – Question & Answer Sessions
- Dr. Steve Ellis and Dr. Adrianna Vlachos – Iron Overload, Measurements and Treatments
Ellis – Iron Overload – Adapted from DBA Day Iron Overload by Dr. Lawrence Wolfe
- Dr. Adrianna Vlachos – Life with DBA
Vlachos – Life with DBA (including iron overload)
- Dr. Harvey Lodish – Enhancing progenitor cell self-renewal: a new approach to stimulating red cell production
Lodish – Enhancing progenitor cell self-renewal; a new approach to stimulating red cell production
- Dr. Vijay Sankaran – A Clinician/Researcher’s Perspective
- Dr. Steven Ellis – Direction of DBA Research & Overview
Ellis – Direction of DBA Research and Overview
In addition to the medical and research aspects, we are extremely grateful for the care and guidance provided to our families through Camp Sunshine’s psychosocial program. The program’s director, Nancy Cincotta, M.S.W., M.Phil, is near and dear to each of us and her expertise and genuine heart help to make Camp a very special and safe place.
The fun continued all week long with nightly entertainment including a magic show, masquerade party, talent show (Who knew we were such a talented bunch?), karaoke, and lots of music, fun, laughing and singing. The week concluded with the campers’ Wish Boat Ceremony and a very special tribute to some very special people.
We were sadly reminded that since Camp of 2013, our DBA family has lost 18 patients. The loss of 18 patients in twenty-four months is a staggering, somber, unacceptable number of deaths. As we released the 18 white balloons, our hearts were heavy and our unwavering commitment to make a difference was strengthened. Our mission to support DBA patients, families, and research needs to be supported and promoted by all of us.
It was inspiring to see younger families and older families come together and meet other DBA families for the very first time. Heart filled connections were made through conversations and play. The feeling of team work and family was felt by all and made Camp a truly memorable experience. It was priceless to watch the doctors interact with the children on the waterfront, and hopeful to watch tears well up in the eyes of a researcher as he spoke of his deep passion to help cure our patients. The research news, clinical information, and one-on-one doctor appointments were appreciated by all. The Dazzling Diamond of Hope was presented to Ryan and Lauren Brady. We were honored to present a $10,000 check to Camp Sunshine in honor and in memory of Dr. Larry Gould. All of this and so much more! Yes, it was truly an indescribable, memorable, beautiful week.
Camp Sunshine holds a strong place in all our DBA families’ hearts. We will be forever grateful for the vision of Camp’s co-founders, Anna Gould and the late Dr. Larry Gould. We sincerely thank the staff and yellow-shirted volunteers of Camp Sunshine, the doctors, DBA Canada, and all those making our family meeting possible. If we have the funding and capabilities, our hope is to host Camp in 2017. Hopefully, we will see many of you in 2017!