VIRGINIA HEMOPHILIA FOUNDATION
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VHF
MONTHLY NEWS & UPDATES
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ANNUAL EDUCATION MEETING: JOIN US!
VHF’s Annual Meeting brings together the inherited bleeding disorders community to share information on a wide variety of topics and it is a great opportunity for networking and support for individuals and families.
Annual Meeting Highlights Include: Sessions on advocacy and storytelling, gene therapy, understanding von Willebrand Disease, a presentation from Perry Parker - PGA Golfer and Gettin' in the Game Athlete; Lyman Fisher Scholarship recognition; VHF chapter updates; on-site children and teen programming; and on-site childcare for 5 and under.
When: Saturday, June 22nd, 8:00 am
Where: Natural Bridge Historic Hotel & Conference Center
Cost: $25 fee per registration (not per person)
Overnight accommodations at Natural Bridge Hotel are available on Friday, June 21st and Saturday, June 22nd. Educational programs, scheduled meals, community events, and overnight accommodations are provided at no cost for constituents that live in the VHF coverage area.
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INAUGURAL VHF RED TIE SOIREE WAS A BIG HIT!
Megan Schowengerdt| VHF Development Director
VHF hosted our 15th annual spring fundraiser and inaugural Red Tie Soiree on April 14th! We are thrilled to announce that including sponsorship, donations made that day, and expected matching gifts collectively combined, our event total raised exceeded $37,000! This includes a generous match of $750 from the National Hemophilia Foundation, and a $500 prize for raising the most money in the country out of all the chapters participating in the
2019 NHF Red Tie Campaign.
Also, community member and Board Member Daniel Warren shared his powerful story with the crowd during our “Be a Hemophilia Hero” moment, raising over $3,000 in donations directly toward the mission of VHF.
A sincere thank you to all our event sponsors, attendees, committee members and event day volunteers who made this event possible.
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VOLUNTEER OF THE MONTH: TEMESHA POLLOCK
We are excited to recognize Temesha Pollock as our VHF Volunteer of the Month for May 2019! A mom of two boys, ages 7 and 1, who have hemophilia B, the Pollocks have been involved with VHF less than a year since moving from Florida. They have enjoyed attending educational dinners, the Unite for Bleeding Disorders walk, the Red Tie Soiree, and the 2018 Family Retreat at Great Wolf Lodge. Temesha’s favorite event was the Great Wolf Lodge
“because it gave my son the chance to meet and establish relationships with others dealing with hemophilia in such a fun atmosphere.”
Temesha’s family was recently granted a travel scholarship from VHF to be able to attend their first
Hemophilia Federation of America Symposium in San Diego.
“My family had an amazing time and we were excited to meet families and new lifelong friends. There was a class that was very helpful for our family about sending a child to camp since this will be the first year my son will attend. We learned a lot of tips and got real-live experiences from past campers.”
Temesha has gotten an amazing head start on her fundraising for the Unite Walk this year and has set a goal to raise $1,000! She is well on her way—her team has already raised over $500! Way to go!
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UNITE FOR BLEEDING DISORDERS WALK - REGISTRATION IS NOW OPEN!
Get a head start on all your summer needs with a $50 gift card to Amazon! Simply register YOUR team for the
Unite for Bleeding Disorders Walk OR join an existing team by May 31st to qualify to be entered to win! (Thanks to those who have registered this year - you are entered to win already!)
VHF is excited to be a part of the National Hemophilia Foundation (NHF) walk program, Unite for Bleeding Disorders for our second year. We need YOUR help to reach our $50K goal - this event is a wonderful way to bring community members together with their friends and families in celebration of our UNITY and strength!
Registration is FREE and all are welcome - company and family teams are encouraged to participate.
When: Sunday, October 20th, 11:00 am
Where: Robious Landing Park, Midlothian
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HEMOPHILIA TREATMENT CENTER (HTC) UPDATE
Margy Sennett, RN, MS, CPNP, CPON | Peds Hem/Onc Senior Nurse Practitioner | Pediatric Bleeding/Clotting Disorders Program UVA Children’s Medical Center
We have hired a full time RN for our Hemophilia program: Lindsay Comstock, RN. Patients will be meeting her at their next clinic visit or she may be answering some of their phone calls.
We also have a Registered Dietician at every Comprehensive Hemophilia Clinic, Jackie Zema, RD. Patients will benefit from her excellent nutrition counseling when they come to their Comprehensive Clinic Visit.
The Comprehensive Pediatric Hemophilia Team will be traveling to Winchester on Thursday May 23, 2019 to do our second satellite outreach clinic. We are excited to bring our Doctor, NP, RN, social worker, and physical therapist to our patients in that geographical area!
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GOVERNOR NORTHAM VETOES LEGISLATION THAT WOULD UNDERMINE ACCESS TO QUALITY, AFFORDABLE HEALTH CARE FOR ALL VIRGINIANS
For Immediate Release: May 2, 2019
RICHMOND - Governor Ralph Northam today vetoed House Bill 1661, House Bill 2443, and Senate Bill 1689, legislation which would undermine larger efforts to ensure access to quality, affordable, and comprehensive health care for all Virginians and to stabilize Virginia’s health insurance marketplace. The Governor’s full veto statements are below.
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VHF IS LOOKING FOR VOLUNTEERS!
Volunteers are the “lifeblood” of any non-profit organization – ours included. They are the people who step forward to work at events, sit on committees, and volunteer to serve on our board of directors.
To learn more about volunteering with VHF:
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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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FIRST STEP PROGRAM FOR NEW FAMILIES
First Step Program is designed to support families of infants and young children with hemophilia and other inherited bleeding disorders with community connection and education. This program is for families with children who have been diagnosed with an inherited bleeding disorder in the last 7 years.
Highlights include lunch, educational presentation, networking with other parents and children, and plenty of time to enjoy the children’s museum.
When:
Saturday May 18, 2019, 10:30 am
Where: Children's Museum of Virginia, Portsmouth
Cost:
Free
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EDUCATIONAL DINNER - VIRGINIA BEACH
Join us for an educational program for individuals with an inherited bleeding disorder. Dinner will be provided and there is no fee to attend.
Topic: Making The Grade
Get prepared for the next school year! This program will help you open the lines of communication with your child’s school, help identify roles and responsibilities to help manage your child’s health, and understand laws that ensure students with a bleeding disorder have equal access to education.
Speaker: Jean Marandola, Senior Clinical Specialist, Takeda
When:
Thursday, June 6th, 6:00 pm
Where: Steinhilber’s Restaurant, Virginia Beach
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HACA/VHF TEEN RETREAT - VIRGINIA BEACH
A weekend of fun and learning for teens that are faced with similar challenges.
Highlights include: Sessions on educational opportunities, scholarships, storytelling and advocacy, a panel discussion with young adults who are affected by a bleeding disorder, and a community event at the adventure park!
For teens age 13–17 who live within HACA/VHF territory and meet one of the following criteria:
- Have a bleeding disorder
- Are the sibling of someone with a bleeding disorder
- Have a parent/caregiver with a bleeding disorder
When: Friday, August 9 - Sunday, August 11, 2019
Where: The Founder's Inn and Spa, Virginia Beach
Cost: $25 registration fee per family
If a hotel room is requested then parent/caregiver must be in attendance with registered teen(s). Overnight accommodations at The Founder’s Inn will be available on Friday, August 9th and Saturday, August 10th.
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HACA/VHF YOUNG ADULT RETREAT - VIRGINIA BEACH
JOIN US FOR OUR FIRST EVER YOUNG ADULT RETREAT! A weekend of connection and learning for young adults that are faced with similar challenges. Join us for a chance to develop tools for self-advocacy and continued learning.
What to expect: Opportunities for growth and skill development through interactive sessions on navigating the insurance landscape, do’s and don’ts of career success, disclosure, time for relationship building, and more.
For young adults 18-24 who live within HACA/VHF territory and meet one of the following criteria:
- Have a bleeding disorder
- Are the sibling of someone with a bleeding disorder
- Have a parent/caregiver with a bleeding disorder
When: Friday, August 9 - Sunday, August 11, 2019
Where: The Founder's Inn and Spa, Virginia Beach
Cost: $25 fee per registration
*If you are a young adult 21 and older and you are paying for yourself and the fee is a barrier for you to be able to attend please check “pay by check” on the payment form and email heather@vahemophilia.org to discuss options.*
If a hotel room is requested then young adult must be 21 or older or have a parent/caregiver in attendance. Overnight accommodations at The Founder’s Inn will be available on Friday, August 9th and Saturday, August 10th.
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SAVE THE DATE FOR THE BOMBARDIER BLOOD DOCUMENTARY SCREENING IN NORFOLK VIRGINIA ON SATURDAY SEPTEMBER 14TH - MORE DETAILS TO COME!
Colorado-based Mountaineer Chris Bombardier has never let severe hemophilia stop him from climbing some of the world’s tallest mountains. In 2017, Chris partnered with hemophiliac filmmaker Patrick James Lynch and his award-winning production team at Believe Limited to film his journey through Nepal to summit the world’s tallest peak, Mount Everest.
Go here to learn more about the film.
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Check out our photos on
Flickr
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