VHF Annual Gratitude Report For Fiscal Year July 1, 2021 - June 30, 2022
VHF's annual Gratitude Report is now available - go here to read about the impact your contributions had on the mission of VHF and the Virginia bleeding disorders community! We have so much to be grateful for!
Tuesdays at 4:30 (Jan 17, Jan 31, Feb 7, Feb 14, Feb 21)
VIRTUAL – Virginia General Assembly Weekly Check In Join VHF & HACA for a quick overview of weekly events in the Virginia General Assembly and get insight on what to look for, trends and any actions that will need to be taken about proposed legislation of interest to the bleeding disorders community. RSVP HERE
January 19 @ 6:30 pm
VIRGINIA BEACH – Educational Dinner at Dave & Buster’s
Join us for an educational program for individuals with an inherited bleeding disorder. Dinner will be provided and there is no fee to attend. RSVP COMING SOON
January 24 @ 7:00 pm
VIRTUAL – VHF & HACA Advocacy Education Meeting
Join VHF & HACA and hear details about proposed legislation of interest to the bleeding disorders community, its partners and other stakeholders. You will also learn more about how you might be able to get more involved. RSVP HERE
Download our 2023 calendar here.
HACA, VHF, and Camp Holiday Trails (CHT) are teaming up again for Camp Youngblood in 2023 and registration is now open!
Dates: Sunday, July 16 – Friday, July 21, 2023
Location: Camp Holiday Trails
Camp Youngblood is a week-long overnight camp at CHT for children with inherited bleeding disorders, their siblings, and children of members of the inherited bleeding disorder community that reside within the Virginia Hemophilia Foundation (VHF) or Hemophilia Association of the Capital Area (HACA) coverage area. Kids enjoy a week of fun and learning with others that are faced with similar challenges and life experiences.
Pinpoint Patient Recruiting is collaborating with a research company to better understand the experience of people impacted by hemophilia A.
If you or your child (ages 12-17) have been diagnosed with moderate or severe hemophilia A, you may be eligible to participate in a 60-minute virtual interview about your experiences. Those who qualify and participate in the study will receive $125 as a thank you. All information and responses will remain confidential. Please note that you must be a current resident of the US to participate.
To see if you qualify for the study or to get more information, please visit pinpointpatientrecruiting.com/hemophilia-a or contact Michelle Valada at email@example.com.
NHF 2022 Chapter Leadership Seminar Wrap-Up
Kathy Mortimer, VHF Board President
Kelly Waters, Heather Conner and myself attended the NHF Chapter Leadership Seminar (CLS) in Scottsdale, Arizona, November 14-17, 2022. CLS brings Chapter Executive Directors and Board Members, together with Industry Partners, NYLI, and NHF Staff and Board of Directors, from across the country for three days to participate in a series of training activities. It was a great opportunity to meet staff and board members from chapter organizations around the country. Sessions included: Health Equity in the Bleeding Disorders Community, Ensuring Access for Women to Critical Care, a Mindfulness workshop, Developing Regional and Multistate Partnerships and Risk Management for chapters and I led a session for board members on making meetings more efficient.
2023 Travel Grants For National Meetings: Application Deadlines Have Been Set. Don't Miss Out!
VHF is pleased to offer travel grants via the Terry Lamb Enrichment Scholarship that can be used to cover costs to national meetings. Typical award amounts vary click on the "Learn More" button below for more details.
Meeting: National Hemophilia Foundation (NHF) Washington Days, March 8 – 10, 2023
NHF Washington Days Travel Grant via the Terry Lamb Enrichment Scholarship Deadline: 11:59 pm, Monday, December 12, 2023
Meeting: Hemophilia Federation of America (HFA) Symposium, April 13-16, 2023 at the Sea World Renaissance Hotel, Orlando, FL
HFA Symposium Travel Grant via the Terry Lamb Enrichment Scholarship Deadline:11:59 pm, Friday, January 6, 2023
HFA And NHF Community Resources
NHF's National Youth Leadership Institute (NYLI)
NYLI is a two-year program that provides young people (18-24 years old) in the bleeding disorders community with leadership opportunities to encourage personal growth, effect change, and positively influence others. Applications for 2023 cohort open December 12, 2022 - February 27, 2023.
"The NYLI program by NHF is an amazing opportunity to share your story, receive crucial guidance in developing skills for your future careers, and doing a variety of much needed good for the bleeding disorder community as a whole. I have shared my story and heard others and through that we have actually helped to outline the needs of the community. In regards to the skills you develop, it depends on what track you choose. This year for the 2022 Cohort we were given the chance to choose between the Research, Education, and Advocacy tracks. Each track will have you working with highly skilled professionals and give you the chance to learn from them. With that said, I highly recommend applying if you are 18-24 years old and have or are a sibling to an individual with a bleeding disorder." -VHF volunteer, Sam Petty, NYLI Cohort of 2022
New Document to Help Residential Substance Use Disorder Placement for Individuals with Bleeding Disorders
Historically, many residential substance use disorder (SUD) facilities have denied admittance to individuals with bleeding disorders – the basis of these denials are most often the use of self-administered, intravenous medications such a as factor replacement therapies. The lack of access to residential addiction treatment facilities, can have very serious, even fatal outcomes for bleeding disorder (BD) patients in acute need of help with their addiction.
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 firstname.lastname@example.org. We look forward to working with you!
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