FACTS N' FACTORS
MAY 2018
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The Virginia Hemophilia Foundation (VHF) 2018 Strategic Planning Survey
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We are interested in learning more about you and your insights regarding the programs, services, and opportunities that VHF offers. We estimate that the survey will take between 5-15 minutes. The more honest and open you are with your responses, the more we’re able to create a strategic plan that best serves the VHF community.
SURVEY RESPONSE DUE BY MAY 14, 2018
Please provide your contact information at the end of the survey if you would like to be entered into a raffle drawing.
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WE DID IT! In a combination of efforts starting at our Bowling for Bleeding Disorders event, through World Hemophilia Day, VHF raised nearly $5,200 through the
Red Tie Campaign
! We are also thrilled to announce that our chapter was TOP in the country for most funds raised, and we also won 2nd Place for “most number of unique donors ” with over 80 donors! These efforts have earned us matching and incentive funds from the
National Hemophilia Foundation
totaling $1300!!
This huge success is all thanks to you, our amazing community. We had outstanding support at our Bowling Fundraiser and March Community Event, as well as 100% attendee participation at our Adult Retreat and World Hemophilia Day Event. We also had MANY other people respond to our requests to support! Thank you for putting on your red ties over the last six weeks--your support has made all the difference!
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RSVP BY MAY 10th!
Join us in
Newport News, June 8 - 9 at the Marriott at City Center
for VHF’s Annual Education Meeting! This event brings together the inherited bleeding disorder community to share information on a wide variety of topics, from the basics of diagnosis to the most relevant developments in treatment. It is a great opportunity for networking and support for individuals and families.
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Teen/Young Adult Scholarship to Attend NHF Annual Meeting
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DEADLINE HAS BEEN EXTENDED TO MAY 10TH!
VHF is pleased to offer a special scholarship for a qualified individual, ages 16 to 24, to attend the
NHF Bleeding Disorders Conference in Orlando, FL October 11-13, 2018
. National Meetings enable our community to gather and exchange information on a variety of topics, from the basics of diagnosis to recent developments in treatment and technology.
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May
6:30 pm - 8:30 pm at Maggiano’s Short Pump Town Center
4:15 pm - 9:00 pm at Harbor Park Hits at the Park Restaurant
6:30 pm - 8:30 pm at Vito’s Italian Kitchen
June
Newport News at the Marriott at City Center
4:00 pm at
Calvin Falwell Field in Lynchburg
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Educational Dinner in Roanoke April 5th
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Heather Conner | VHF Program and Communication Director
Six families gathered together for a presentation on Micro Bleeds presented by nurse educator Janella Schwartz. There is an incredible spirit and energy in the Southwest Virginia bleeding disorders community that has formed over the past few years and we are so grateful to Davida Wickline for being our volunteer representative at these events! We could not do what we do without the help of volunteers, and Davida serves on our Program Committee and is also a valuable member of our community! Thank you to our sponsor Octapharma.
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World Hemophilia Day Event in Norfolk April 14th
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Heather Conner | VHF Program and Communication Director
Saturday, April 14th, VHF members took part in Science Matters! A family-friendly event in recognition of World Hemophilia Day filled with learning and inspiration. The event was at the always popular Nauticus, a maritime-themed science center and museum, and attendees were treated to an educational presentation, lunch, and tickets to the museum. Thank you to our sponsor Bioverativ and HPC Specialty Pharmacy.
Go here to view photos from the event.
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Hope Blooms Spring Fundraiser in Richmond April 22
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Megan Schowengerdt | VHF Development Director
Virginia Hemophilia Foundation held its annual spring fundraiser, Hope Blooms, on April 22nd at the Boathouse at Rockett’s Landing in Richmond, Virginia. The gorgeous James River and a beautiful spring day was the backdrop as 100 guests gathered in celebration of the season and to raise funds for the VHF mission of serving and supporting the needs of those impacted by a bleeding disorder through education, advocacy and community.
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Hemophilia Federation of America 2018 Symposium
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Daniel Warren | VHF Board Member and VA Representative, HFA Board of Directors
The
Hemophilia Federation of America (HFA) held its annual Symposium in Cleveland, OH, April 26-29, 2018
, and it was a truly special weekend for all who attended. HFA announced that they will soon be live with their e-learning portal to continue reaching a broader audience with online bleeding disorder education modules for everyone from first-timers to veterans in the community. In keeping with their mission and vision statements, conference days were structured to sequence education and advocacy with attendees’ personal standing,
including their Blood Brotherhood and Blood Sisterhood sessions as well as an all-Spanish speaking track.
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Family Weekend at Camp Holiday Trails
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Heather Conner | VHF Program and Communication Director
VHF and the Hemophilia Association of the Capital Area (HACA) joined together April 27th - 29th at Camp Holiday Trails (CHT) for a weekend of education, support, and traditional camp activities for the whole family! Friday night was spent by the campfire with s'mores, stories, and catching up with friends both old and new. On Saturday, while the kids did messy art and climbing wall, the adults had back-to-back education sessions, "The Science of Hemophilia A: A Changing Landscape" and then "The Power of Empowerment". The day was rounded out with education on self infusion - thank you to Amy Walker for facilitating a fun infusion game and to the teens who demonstrated self-infusion for those families that were interested in watching and learning more!
Go here to see more photos.
Thank you to our sponsors Hemophilia Federation of America (HFA), Bioverativ, Diplomat, DrugCo Health, Genentech, Novo, and Shire.
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International Study Group Findings Suggest Prophylaxis Could Reduce Hospitalizations for VWD Patients
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Researchers from Sweden and the U.S. recently published an article that focused on potential correlations between patients with von Willebrand disease (VWD), hospitalizations and prophylaxis. The authors conducted a retrospective study of inpatients and outpatients, both with and without VWD. Their objective was to investigate the frequency of hospital admittances and determine whether the implementation of a prophylactic treatment regimen is associated with a reduction in hospitalizations.
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MASAC Issues New Treatment Recommendation
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The National Hemophilia Foundation’s (NHF) Medical and Scientific Advisory Council (MASAC) has issued the latest revision to their most comprehensive treatment document, which is periodically updated to provide information on current bleeding disorder therapies available in the U.S. The new document, which is listed below, was approved by MASAC on April 19, 2018.
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