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! 

Join VHF in 2023

January 2023

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.

Camp Youngblood Is Back!

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.

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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.

Interested? 

To see if you qualify for the study or to get more information, please visit pinpointpatientrecruiting.com/hemophilia-a or contact Michelle Valada at michelle@pinpointpatientrecruiting.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

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HFA And NHF Community Resources

As we close out 2022 and look forward to 2023 be sure to stay informed with the latest updates for the inherited bleeding disorders community from our national partners the  National Hemophilia Foundation (NHF) and the Hemophilia Federation of America (HFA).

On the NHF news page you can learn more about such things as the Continued Conversations on the State of Access to Women’s Health Care and meet the Judith Graham Pool (JGP) Fellows that focus on science and pre-clinical research to expand our understanding of bleeding disorders.

On HFA’s news page make sure to read the HFA Statement On FDA Approval Of First-Ever Gene Therapy For Hemophilia B and don't miss important advice on shopping for insurance in 2023 as Open Enrollment Begins Again. Also, check out HFA's new website where they have organized community resources into easy to search categories with a robust list of financial assistance programs available nationwide including information on government benefits, utility and housing assistance, dental care, baby/child items, food, grants, insurance help, and utility discount programs.

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.

Ways to Give

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!

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