Over 150 VHF constituents of all ages gathered together on Saturday, October 15th for our Annual Medical Symposium held this year at the Great Wolf Lodge Conference Center in Williamsburg, VA. It was truly wonderful to offer this program in-person for the first time in almost 3 years, when you view the photos you will see the joy and connection that was felt by all. »Go here to see photos from the event.
We were honored to have keynote speaker, Dr. Kevin Todd who is the new medical director of the Hemostasis and Thrombosis program at CHKD. Dr. Todd presented an engaging talk on emerging therapies in the bleeding disorders community that was developed by the Hemophilia Federation of America (HFA). HFA also provided the 9-12 year olds with the education session “My Story of Resilience” facilitated by Caitlin Carroll, MSW, Camp Holiday Trails (CHT) Director of Programs. Attendee Beth S. shared with us the impact this session had on her kids.
“It was so lovely to see everyone, and it was so evident to me how much love and work was put into making such a fun and educational community event! Thank you so much for all your hard work! And I wanted to tell you that the kids program was great, too! Malcolm and Kaylee showed me the resilience coloring books they got on Saturday, and what a fantastic educational tool that is!! Malcolm told his homeschool co-op class on Monday about his weekend at the program at Great Wolf Lodge, and he was able to tell them all about his hemophilia. Seeing how comfortable and confident he was made my heart so happy.”
And Tanya Brennan, shared this with us “We REALLY enjoyed ourselves as well. The kids made friends and are now really interested in the summer camp program.”
Attendees also had time to visit sponsors and sit in on break-out sessions where they learned more about VWD, gene therapy research and clinical trials, women with hemophilia, and more. During a general session, the National Hemophilia Foundation’s (NHF’s) Senior Director of Business Development, Tim Brent shared more about an exciting partnership between the community and NHF called Community Voices In Research (CVR) a tool developed with the advice of multiple key stakeholders in the community and launched in 2019.
We could not provide this program without the help of our volunteers and our sponsors – thank you for all you do for the bleeding disorders community!
Thank you to our volunteers – Debbie Baugher (VHF Board Member), Tahnee Causey (VHF Board Member), Kierra Davidson (Teen Program), Gage Dempster, Monika Eiden, Murai Johnson (VHF Board Member), Soren Johnson (Teen Program), Vivek Kshetrapal (VHF Board Member), Kathy Mortimer (VHF Board Member), Samuel Petty, Beth & Donald Smith (VHF Board Member), Cyndi & George Stone, Matt Stone (Teen Program), Amy Walker (VHF Board Member), and Patti Williford.
Thank you to our Program Sponsors –
Colburn-Keenan Foundation – Program Support
Hemophilia Federation of America (HFA) – Educational Programming
National Hemophilia Foundation (NHF) – Community Voices in Research
Thank you to our Medical Symposium Sponsors –
Star Level: BioMarin, CSL Behring, Novo Nordisk, Sanofi, Spark Therapeutics and Takeda
Premier Level: Hema Biologics and Hoos at Home
Corporate Level: Bayer, BioMatrix, CSI Pharmacy, CVS Specialty Pharmacy, Drugco Health, Genentech, Medexus, Octapharma, Optum, Paragon Healthcare, Pfizer and SoleoHealth