MARCH 2020
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VHF CHAPTER
UPDATES
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MARCH IS BLEEDING DISORDERS AWARENESS MONTH
Bleeding Disorders Awareness Month is a time of great celebration and reflection. Since our founding in 1975, you and all of our community members and supporters have been the lifeblood of VHF. We could not be more thankful for where we have come from, and where we are headed. Your support has made all of our programs, advocacy efforts, and community engagement possible.
This March, we are hoping to raise $5,000 to help us continue to grow and evolve. Our community’s needs are changing, and we will be there with your help as therapy options evolve for our members, and social and emotional needs transition. Every single dollar raised through the campaign stays local and goes directly back to supporting our amazing community - all of you! Thank you for all you have done and continue to do. No gift is too small. Please consider making a gift today.
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MASAC LETTER TO THE COMMUNITY REGARDING THE CORONAVIRUS DISEASE
The Centers for Disease Control and Prevention (CDC) is responding to the rapidly evolving situation of the outbreak of respiratory disease (COVID-19) caused by a novel coronavirus (SARS-CoV-2). Though this was first detected in Wuhan City, Hubei Province, China, it has now been detected in over 60 countries worldwide, including the United States. MASAC recognizes that, whereas this is causing global concern, there are unique concerns that have been raised within the bleeding disorders community.
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2020 GENERAL ASSEMBLY
Becky Bowers-Lanier | VHF & HACA Advocacy Consultant
At the time of this writing, the 2020 General Assembly is about to adjourn its “long” (60 day) session until the Assembly returns for the “reconvened” one-day session April 22nd. It’s been a session of firsts:
- First time in a generation that the Democrats are in the majority in both the Senate and the House;
- First female Speaker of the House (Del. Eileen Filler-Corn); and
- First time VHF had to cancel its annual advocacy day traditionally held on Martin Luther King, Jr., Day.
While we missed our day, we thank you for advocating for a bill when we sent out a call to action and look forward to sharing more advocacy opportunities in 2020.
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NATIONAL HEMOPHILIA FOUNDATION (NHF) WASHINGTON DAYS
Kelly Waters | VHF Executive Director
Over 450 advocates from around the country gathered in Washington D.C. for NHF’s Annual Washington Days. This year our travel grant recipients and their families advocated for Congress to continue to support the funding for the federal hemophilia programs through the National Institute of Health (NIH), the Centers for Disease Control (CDC), and the Health Resources and Services Administration (HRSA). In addition, we focused on the Hemophilia Skilled Nursing Facility (SNF) Access Act (S. 3233; HR 5952) which adds bleeding disorders treatment to a list of high cost, uncommon services that SNFs may separately bill for under Medicare Part B. This change in Medicare law will allow people with bleeding disorders to receive care in SNFs when needed.
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NEEDS ASSESSMENT: REGIONAL MEN'S EVENT
Calling all men (age 21 and older) of the bleeding disorders community - men with an inherited bleeding disorder, fathers, caregivers, spouses and significant others! VHF, HACA, Hemophilia of North Carolina (HNC), and Hemophilia of South Carolina (HSC) have been discussing the idea of collaborating on a two-day/two night regional men's retreat for 2021. We are reaching out to our collective communities to see if there is enough interest to move forward. Please take a few minutes to fill out this needs assessment so that we can see the level of interest in this collaboration.
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VHF TRAVEL GRANT FOR A NATIONAL MEETING
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What: National Hemophilia Foundation (NHF) Bleeding Disorders Conference
When: August 6 - 8, 2020
Where: Atlanta, GA
VHF is pleased to offer travel grants to attend national meetings. National meetings enable our community to come together and exchange information on a wide variety of topics, from the basics of diagnosis to the most relevant developments in treatment and technology. It is the premier opportunity for networking and support for individuals and families affected by inherited bleeding disorders.
Travel Grant Award:
Travel grants will cover airfare/mileage, hotel accommodations, and national meeting registration fees. Not to exceed a total of $2,000. You will be responsible for all meals and other incidentals.
Application Deadline:
11:59 pm, Friday, March 13, 2020
Eligibility:
These grants were designed for individuals living with an inherited bleeding disorder and their immediate family and/or household members. Applicants must have participated in VHF activities and live in the territorial jurisdiction of VHF. See each application for more eligibility information.
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VHF LYMAN FISHER SCHOLARSHIP
The VHF Lyman Fisher Scholarship was established to honor Dr. Lyman Fisher; a teacher, researcher, and clinician in hemostasis who for many years directed the adult hemophilia program in Virginia.
Scholarship Award:
One-year award in the amount of $2,000 for a full academic year
Application Deadline:
11:59 pm, Friday, May 1, 2020
Eligibility:
The scholarship was designed for individuals living with an inherited bleeding disorder, their sibling or their parents and may be used at any accredited non profit college, university, or vocational/technical school in the United States and is to be applied toward educational expenses. Applicants must have participated in VHF activities and live in the territorial jurisdiction of VHF. Previous recipients are eligible to apply.
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Sponsorship of 2020 events is still available, for more information contact Kelly Waters at
kelly@vahemophilia.org
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EDUCATIONAL DINNER - RICHMOND
Join us for an educational program for individuals with an inherited bleeding disorder. Dinner will be provided and there is no fee to attend.
When:
Thursday, March 19th
Where: Southbound, 3036 Stony Point Rd., Richmond, Virginia 23235
Topic: Understanding Von Willebrand Disease
Developed for those with vWD or interest in learning more about vWD. Did you know that von Willebrand disease is the most common inherited bleeding disorder? This HELLO TALK program provides an educational format to introduce the symptoms and types of von Willebrand disease, recognize potential treatment options, and learn how emotional and community support systems can help those living with this bleeding disorder.
Speaker: Betsy Koval, Senior Clinical Specialist, Takeda
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EDUCATIONAL DINNER - NEWPORT NEWS
Join us for an educational program for individuals with an inherited bleeding disorder. Dinner will be provided and there is no fee to attend.
When:
Thursday, March 26
Where: Al Fresco, 11710 Jefferson Ave., Newport News, Virginia 23606
Topic: Constructive Conversations
Gain an understanding of how motivational interviewing helps individuals living with hemophilia interact with caregivers and health care providers. Examples of effective conversations are presented.
Speaker: Linda L. Pollhammer BSN,RN, Rare Disease, Patient Affairs Liaison Pfizer
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RED TIE SOIREE
When:
Sunday, April 19, 2020, 3:00 pm to 6:00 pm
Where:
Dewey Gottwald Center at the Science Museum of Virginia
2301 W Leigh St., Richmond, VA 23220
Join VHF, guests and supporters at the 16th annual spring fundraiser, the Red Tie Soiree! This event is an amazing opportunity to enjoy specialty hors d’oeuvres from Mosaic, craft cocktails, games, and a fantastic live and silent auction, all in support of VHF and all to help those living with inherited bleeding disorders in Virginia.
Wear your favorite red dress or tie and come ready to have fun in honor of World Hemophilia Day! Some of our incredible auction items this year include:
- Private in-home wine tasting for eight
- Two grandstand tickets to the NASCAR COCA-COLA 600 at Charlotte Motor Speedway
- Richmond Symphony and Richmond Ballet tickets
- Spa packages including facials and massages
- Craft beer selection hand-picked by the VHF Board of Directors
And dozens more! VHF and our Host Committee members are excited to welcome you for an afternoon of celebration and giving back. Tickets are just $50 for an individual and $90 for a couple and include your exclusive bidder number for the live and silent auction, two drink tickets per person, delicious hors d'oeuvres, desserts, and non-alcoholic beverages. Table sponsorship is also available.
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CAMP YOUNGBLOOD
When:
Sunday, July 5 – Friday, July 10, 2020
Where:
Camp Holiday Trails,
400 Holiday Trails Ln., Charlottesville, VA 22903
Applications Due:
March 30, 2020
A week-long overnight camp for children with inherited bleeding disorders, their siblings, and children of members of the inherited bleeding disorder community. Kids enjoy a week of fun and learning with others that are faced with similar challenges and life experiences.
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Check out our photos on
Flickr
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