Camp Youngblood 2023: It Was Great To Be Back! |
Caitlin Carroll, MSW, Director of Programs, Camp Holiday Trails
After waiting 3 years, Camp Holiday Trails (CHT) was excited to welcome back our Camp Youngblood families to CHT for the first time since 2019. What an amazing week of laughter, new experiences, pranks and of course making lasting memories. We welcomed at least 16 new campers to Camp Youngblood this summer and cannot wait to see them back with us in Summer 2024. Huge thank you to Dr. Colleen Druzgal from UVA’s Pediatric Hemophilia Treatment Center who was our medical lead for the week along with RN Amy Walker who not only assisted with infusions for some of our campers, but also led infusion clinics where multiple campers and CHT staff received their “golden stick”.
|
VHF Medical Symposium: Registration Ends Soon! |
VHF Board Of Directors 2023-2024: Welcome New Members! |
July 1, 2023, is the beginning of VHF’s fiscal year, which includes welcoming new board members and thanking those that are rotating off. VHF is fortunate to have dedicated, knowledgeable, and skilled members leading the organization. VHF would like to offer a special thank you to Vivek Kshetrapal, who served VHF as a board member from 2021-2023. He was a very active member of the development committee and instrumental in ensuring a successful UNITE Walk fundraiser.
|
Member Spotlight: Jackson White |
Jackson White, VHF Lyman Fisher Scholarship Recipient, 2016 and 2017
As a hemophiliac, I always felt that I had a special connection with biomedical science. So in college I decided to pursue a degree in biophysical chemistry at James Madison University. Upon graduation, I continued to grow my interests in the biomedical sciences by joining the Broad Institute of MIT and Harvard, a world-renowned genomics research institution. I am currently winding down my time at the Broad, as I’ve been selected to join the NIH Oxford-Cambridge Scholars Program this upcoming fall.
|
Hemophilia Federation Of America (HFA) Webinar: Credit and Debit Decoded: Empowering Financial Decision-Making |
Join HFA for the second part in a three-part webinar series with Debra Jacobs, Ed.M. and founder of Smart Money for Life on September 21 at 8:00 pm ET. Whether you’re just starting your financial journey or want to add to what you already know, this webinar will give the knowledge and tools to make progress toward financial wellness. |
National Hemophilia Foundation (NHF): National Research Blueprint Update |
Update on the progress of the National Research Blueprint (NRB) initiative - The seven NRB working groups [(WGs); (Research and Development; Community Engagement, LEE (lived experience experts), Policy; and Health Equity, Diversity and Inclusion)] have been working for over a year and are now meeting regularly to integrate their individual output into one cohesive and comprehensive blueprint. Please visit the NRB website and/or read this brochure for detailed information.
|
World Federation of Hemophilia (WFH): Susan Skinner Memorial Fund Scholarship |
The World Federation of Hemophilia Susan Skinner Memorial Fund Scholarship (SSMF) provides a unique opportunity for recipients to network and develop skills that can be used to empower themselves and others to advocate for the improved care of women with bleeding disorders in their communities and worldwide. Scholarship recipients will be granted a once-in-a-lifetime opportunity to attend the WFH 2024 World Congress in April next year. Congress brings leading experts, healthcare professionals, advocates, representatives from the industry, and other partner organizations worldwide together in one place, offering participants an unparalleled opportunity for networking, knowledge exchange, and self-empowerment. Questions? Please contact WFH at ssmf@wfh.org
|
Patient Safety in the Age of Gene Therapy a Central Focus of Review Article |
After several decades of preclinical and clinical research, pitfalls and progress, gene therapies for hemophilia A and B have become a reality with recent FDA approvals. While these therapies, along with others still in development, represent both promise and a notable scientific achievement, outstanding questions relevant to long terms efficacy and safety remain. Authors of a new review “Hemophilia Gene Therapy: First, Do No Harm,” published in the Journal of Thrombosis and Haemostasis (JTH), tackle these concerns.
|
|
|
Thank you for your support of the Virginia Hemophilia Foundation (VHF). For some popular ways to give back and help us serve the inherited bleeding disorders community in Virginia, go here. If you have other ideas or questions, please contact Kelly Waters, Executive Director, at info@vahemophilia.org. We look forward to working with you!
|
|
|
Our Contact Information
*{{Organization Name}}*
*{{Organization Address}}*
*{{Organization Phone}}*
*{{Organization Website}}*
*{{Unsubscribe}}* |
| |
|
|
