MARCH
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2019
VIRGINIA HEMOPHILIA FOUNDATION
UPDATES
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MARCH IS A GREAT TIME TO SHOW SUPPORT AND RAISE AWARENESS FOR THE BLEEDING DISORDERS COMMUNITY
Bleeding Disorders Awareness Month was approved by the U.S. Department of Health and Human Services as a National Health Observance in March 2016. This month aims to bring together people with inherited bleeding disorders to raise awareness of these rare conditions and their potential challenges.
How you can help support
Bleeding Disorders Awareness Month:
- Read Hemophilia Federation of America's (HFA's) "Dear Addy" Advice Column where HFA put together an advocacy calendar for the month and shared tips for how you can make advocacy a part of your regular routine.
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BUILD COMMUNITY THIS BLEEDING DISORDERS AWARENESS MONTH
Throughout the month, we will be sharing stories of families like the Kreceks, who have been impacted by the work of VHF, made possible only by generous donations from people like you.
Please give today
, and know that your support is going to a worthy cause.
“Christine’s brothers were born with hemophilia A, as well as one of her nieces. Because of our family history, when we got pregnant with our oldest son, we did some genetic counseling and testing, which showed that Christine was a carrier, so we knew our child had a 50% chance of being born with hemophilia. Turned out our oldest son was not born with hemophilia, but our youngest Nick was born with severe hemophilia A.
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VHF ADVOCATE SPOTLIGHT: KRISTA DAVIDSON
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We are excited to share that Krista Davidson, Virginia Advocacy Working Group Co-chair, has been selected to be a part of
HFA’s inaugural Advocacy Leadership Council (ALC)
. HFA developed the ALC to build a robust grassroots network of engaged advocates to raise awareness, ensure strong policy protections, and improve health outcomes and quality of life for people living with bleeding disorders. The Advocacy Leadership Council is a volunteer opportunity for community members to support HFA’s advocacy initiatives and participate in a 2-year leadership development program on a number of policy and advocacy issues.
I hope you’ll join us in congratulating Krista. She is about to embark on a very comprehensive training to become a greater advocate for our community!
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VHF/HACA FAMILY BLEEDING DISORDERS CAMP AND CAMP YOUNGBLOOD APPLICATIONS NOW OPEN
VHF/HACA Family Bleeding Disorders Camp at Camp Holiday Trails, Friday, April 26 – Sunday, April 28, 2019
A weekend camp for families impacted by an inherited bleeding disorder. This program is designed for families with at least one child living at home who is between the ages of 5 – 17, whose children are camp ready and/or are looking to attend camp in the next two years.
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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*Sponsorship of 2019 events is still available, for more information contact Kelly Waters at
[email protected]
or 804-740-8643*
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EDUCATIONAL DINNER MARCH 21ST
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 21st, 6:30 pm
Where:
Gallina Grasso Italian Kitchen, Newport News
The topic will be:
Infusion Support
An overview focusing on infusion techniques and best practices when dealing with the challenges faced by those that are affected by hemophilia.
Speaker:
Linda L. Pollhammer BSN,RN, Rare Disease | Patient Affairs Liaison Pfizer
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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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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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