VIRGINIA HEMOPHILIA FOUNDATION
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VHF
MONTHLY NEWS & UPDATES
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BLEEDING DISORDERS AWARENESS MONTH WRAP UP: THANK YOU!
Megan Schowengerdt | VHF Development Director
Your support of Virginia Hemophilia Foundation’s first ever Bleeding Disorders Awareness Month Annual Fund Campaign was incredible! Together we raised over $2300 towards helping the Virginia bleeding disorders community and these donations will go far! When you support VHF you are funding camp for our youth, scholarships, year-round advocacy efforts, and so much more. THANK YOU from the bottom of our hearts! Also, we want to thank the wonderful families who shared their stories this past month for their candor and openness – you are all amazing! Special thanks to Lamont Banks, the Krecek family, Marquita Reinhardt and family, the Walker family, and Patti Williford.
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VHF'S FIRST EVER MEDICAL SYMPOSIUM WAS A SUCCESS!
Kelly Waters | VHF Executive Director
We had a great kick-off to Bleeding Disorders Awareness Month with our first (hopefully annual) Medical Symposium on Saturday, March 9th. Almost 100 individuals joined us to learn to learn more about emerging therapies, the ins-and-outs of clinical trials, as well as insurance trends and barriers for the bleeding disorders community. There was also an opportunity for participants to sit with others who have a similar diagnosis during lunch to gain additional networking and support. Attendees also visited sponsor exhibit tables and were able to meet with premier sponsors in a round table format to learn more about their products and/or services. Thank you to our sponsors and Hemophilia Treatment Center (HTC) team in helping us create and host an incredible educational opportunity for our Virginia bleeding disorders community. Thank you to our generous sponsors: Bayer, BioMarin, CSL Behring, CVS Caremark Specialty Pharmacy, Genentech, Octapharma, Pfizer, Sanofi Genzyme, Spark Therapeutics, and Takeda.
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2019 WASHINGTON DAYS
Over 25 advocates from Virginia with bleeding disorders and their families met with members of Congress and their staff at National Hemophilia Foundation's Washington Days on March 28th. This yearly event brings people from nearly every state in the US to the capital to ensure that people with bleeding disorders have access to affordable, quality health insurance.
From attendee Jack Spasojevich
" I really enjoyed feeling like I was able to make a difference for the bleeding disorders community by going around and talking to the representatives and their staff. I felt like I was able to show them an example of some of the people affected by these very influential bills and acts that are getting passed, and hopefully teach them a bit about hemophilia too."
From attendee Cody Davidson
"Overall, talking to our representatives about bleeding disorders was a cool experience. I felt comfortable talking about hemophilia and would like to help other people share their stories."
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VHF ADVOCACY UPDATE - SPRING 2019
Becky Bowers-Lanier | VHF & HACA Advocacy Consultant
The bleeding disorders community had a very good legislative session. During Richmond Days in January, we talked about two types of bills that we were supporting: the step therapy and the accumulator adjuster measures.
Passage of both bills has the potential to improve the lives of our community, and both passed!
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VIRGINIA FIRST IN NATION TO PROTECT PATIENTS FROM INSURANCE TACTIC UNDERMINING ACCESS TO CARE
Published in the Augusta Free Press Tuesday, Mar. 26, 2019
“Hemophilia patients, and others with chronic conditions, often rely on copay assistance and cannot afford to pay thousands of dollars at the pharmacy counter before they can get the medication they rely on,” said Kelly Waters, executive director of the Virginia Hemophilia Foundation. “I am proud to see Virginia leading the nation in addressing this issue for our patients.”
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*Sponsorship of 2019 events is still available, for more information contact Kelly Waters at
kelly@vahemophilia.org
or 804-740-8643*
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R
ED TIE SOIREE: A LIVE AND SILENT AUCTION TO BENEFIT VHF
Join VHF at our annual signature spring benefit. Attendees will come together to celebrate and support the inherited bleeding disorders community during this special afternoon of cocktails, hors d’oeuvres and a fabulous live and silent auction. This event is in special recognition of World Hemophilia Day on April 17th and attendees will wear red in support of Bleeding Disorders Awareness! Open to all attendees age 21 and up.
When:
Sunday, April 14, 2019, 3:00 pm
Where:
Dewey Gottwald Center, Richmond
Tickets:
$50 per person | $90 per couple
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WORLD HEMOPHILIA DAY COMMUNITY EVENT APRIL 17TH
Join your bleeding disorders community to honor World Hemophilia Day. This program will include dinner, a presentation discussing the benefits of practicing gratitude, and an activity building gratitude trees with note tag leaves. Everyone will go home with their own gratitude tree, a brochure providing background on the science behind the benefits of practicing gratitude, and a journal so you can participate in a 21 Day Gratitude Challenge. Also, the Science Museum of VA will be lit up red that night in honor of World Hemophilia Day!
When:
Wednesday, April 17th, 6:30 pm
Where:
Science Museum of Virginia, Richmond
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VHF/HACA CAMP YOUNGBLOOD APPLICATIONS NOW OPEN
VHF/HACA Camp Youngblood at Camp Holiday Trails, July 7 – July 12
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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UNITE WALK - REGISTRATION NOW OPEN
Join VHF as we UNITE for Bleeding Disorders! VHF is excited to be a part of the National Hemophilia Foundation (NHF) walk program, Unite for Bleeding Disorders. We hope to see many of our amazing friends and supporters there! All are welcome and company and family teams are encouraged to participate.
When:
Sunday, October 20, 11:00 am
Where:
Robious Landing Park, Midlothian
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Check out our photos on
Flickr
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