APRIL 2021
BLEEDING DISORDERS AWARENESS MONTH UPDATE: THANK YOU!
VHF would like to warmly thank every person who donated and helped spread awareness for our March Bleeding Disorders Awareness Month Campaign. From news articles to school-wide awareness campaigns to Facebook Fundraisers, you truly banded together as a community of supporters for our members living with inherited bleeding disorders, and we are so grateful.

WOW! Collectively, you raised and donated nearly $5,500 toward the March Bleeding Disorders Awareness Month Campaign and blew our original goal of $2500 out of the water! We fundraised this year on behalf of our Scholarship Program, and your gifts will fully fund two Lyman Fisher Scholarships of $2000 each. Additional funds will support our Terry Lamb Enrichment Scholarships! For a full list of donors who gave toward this campaign, please see here:
VHF LYMAN FISHER SCHOLARSHIP
Application Deadline: 11:59 pm, Friday, April 30, 2021

Scholarship Eligibility: Individuals living with an inherited bleeding disorder, their sibling or their parents who live in the territorial jurisdiction of VHF, which includes the State of Virginia, with the exception of the following: The cities of Alexandria, Fairfax, Falls Church, Herndon, Manassas, and Vienna and the counties of Arlington, Fairfax, Fauquier, Loudon, Prince William and Stafford.

Scholarship applicants must have participated in VHF activities.

Scholarship Award: Scholarships are one-year awards in the amount of $2,000 for a full academic year. While two scholarships are available each year, VHF is not obligated to award scholarships in a given year. The scholarships may be used at any accredited nonprofit college, university, or vocational/technical school in the United States and are to be applied toward a student’s educational expenses.
STATE ADVOCACY UPDATE
Becky Bowers-Lanier | VHF & HACA Advocacy Consultant

The Virginia General Assembly Special Session 1 adjourned sine die March 1, 2021. This special session built off the regular session which began January 8, 2021 and extended 30 days until February 8th, at which time it adjourned, to be called back for Special Session 1 which began on February 10th. Usually “short” sessions do not work like this, but these are not normal times, as we know. The Senate continued to meet in person at the Science Museum of Virginia, and the House of Delegates met virtually through Zoom throughout the regular and special sessions.
FEDERAL ADVOCACY UPDATE: VIRTUAL WASHINGTON DAYS
Nathan Schaefer | Senior Policy Advisor, National Hemophilia Foundation

The National Hemophilia Foundation’s 2021 Washington Days was a huge success! This year’s Washington Days saw 388 bleeding disorder community members, from 46 states, attend over 250 virtual congressional meetings. This year our community advocated for: support for federal bleeding disorders programs, policies that improve access to treatment, prohibiting co-pay accumulators, and improving access to coverage during the COVID-19 public health emergency. NHF also hosted a state advocacy training webinar, following our legislative visits, where community members from across the country were able to learn from their peers around topics ranging from virtual advocacy tips to advocacy successes in 2020.

The bleeding disorders community advocacy efforts did not stop at Washington Days, as over 290 emails and social media posts were sent through NHF’s phone2action platform in the week(s) after Washington Days.

NHF would like to thank all of those involved in the entire Washington Days process. Due to COVID-19, this year's event had to be moved to a fully virtual platform and while we did incur some obstacles, the bleeding disorders community was able to overcome those challenges and advocate to our elected officials.
Advertisement
VIRTUAL HACA & VHF MEN'S RAP SESSION
Date/Time: Thursday, April 8th at 7:00 pm

In partnership with the Hemophilia Association of the Capital Area (HACA), we are offering a virtual Men’s Rap Session on a quarterly basis! We are offering these volunteer led sessions in the hopes that during these times of increased isolation we can help to create a network of men who educate and support each other which can lead to better health and stress management.

These rap sessions are free and open to men who are constituents of VHF/HACA, age 21 and up, and are diagnosed with an inherited bleeding disorder.
VIRTUAL VHF MEDICAL SYMPOSIUM
This program will provide consumers with the knowledge needed to discuss emerging and current treatment options and have conversations around access to care and insurance trends, as well as recognize World Hemophilia Day.

» Please go here to view our Virtual Medical Symposium Program. This program is one way our generous sponsors can virtually connect with the community by providing links to their electronic resources, brochures, websites, social media sites and more!

Medical Symposium: Saturday, April 17th at 3PM
Get information on Insurance Trends with New and Emerging Therapies, learn more about World Hemophilia Day, and get the latest update on NHF’s Plans and Future Directions for the Bleeding Disorders Community.

Presenter Sponsors Education Sessions: April 15th – April 30th
  • Thursday, April 15th at 7:00 pm - Give it a Shot: A Different Type of Hemophilia A Therapy

  • Friday, April 16th at Noon - Meet Jivi

  • Thursday, April 22nd at 7:00 pm - VWD

  • Friday, April 23rd at Noon - You Count On Your Joints More Than You Think

  • Thursday, April 29th at 7:00 pm - Drug Discovery & Beyond

  • Friday, April 30th at Noon - Understanding Gene Therapy Research and Its Potential Application to Hemophilia

When you RSVP for this program you will receive one zoom link for all sessions, you are welcome to join us for one or for all. » Go here to learn more.

VHF constituents will receive a gas and/or grocery gift card. Value will be connected to the number of sessions you attend with a maximum value of $50. If you are a constituent that lives outside of the VHF coverage area and you are interested in registering for this meeting, please email heather@vahemophilia.org for more information.
VIRTUAL WOMEN'S RETREAT
Date/Time: Sunday, May 16th at 4:00 pm

A rejuvenating afternoon retreat filled with educational programming, crafts, and community building. This retreat is open to women age 21 and up with an inherited bleeding disorder/carriers and/or to women whose lives are impacted by a bleeding disorder (i.e. caregivers, spouses, immediate family members).

We will be creating an easy DIY Beaded Suncatcher craft project. Be sure to RSVP by Monday, May 3rd to have the supplies shipped directly to your home.
POP UP BLEEDING DISORDERS DAY CAMP WITH CAMP HOLIDAY TRAILS
We are excited to announce that we hope to have our first in-person, outdoor, pop-up camp experiences this summer with Camp Holiday Trails and Hemophilia Association of the Capital Area!

Save the date for these tentative pop-up camp experiences: Saturday, July 31st in the Northern VA Area, Saturday, August 7th in the Tidewater Area, and Saturday, August 14th at Camp Holiday Trails.

We will have more information on these events soon, but in the meantime please feel free to email us at info@vahemophilia.org and/or call 804-740-8643 if you have any questions or concerns. Do know that we continue to monitor local, state, and federal guidelines.