FACTS N' FACTORS
AUGUST 2018
|
|
Shareable Resources for Schools and Healthcare Providers
|
Be sure you are prepared for the new school year and check out VHF’s webpage on
Shareable Resources for Schools and Healthcare Providers
. Here you will find handouts for school healthcare providers, teachers, and families that you can download and print, as well as basic information on hemophilia, bleeding disorder resources specific to school settings, video and visual educational resources, and relevant information from the Virginia Department Education.
Go here to learn more.
|
|
Unite for Bleeding Disorders Walk - Family Spotlight
|
Sarahbeth Spasojevich, VHF Board President, and her family are excited to fundraise for this year’s
Unite for Bleeding Disorders Walk
on Sunday, October 28th at
Robious Landing Park
! Sarabeth’s son, Jack, has hemophilia, and her two brothers also are affected. We caught up with Sarabeth about why she is fundraising this year and why this walk is so important to her:
What was the first Virginia Hemophilia Foundation (VHF) event that you went to?
“A Norfolk Tides baseball game, back when we lived in Virginia Beach. Growing up in the 80s, I didn't know any hemophiliacs besides my brothers. I heard about them on the news, like the Ray brothers or Ryan White. But most of us were hiding our disease, due to the fears surrounding AIDS -- and not having events or building community. So looking around and seeing other families with hemophilia was comforting and healing, in many ways.”
How has being a part of VHF been meaningful for your family?
"Sleeping with the Fish" overnight at the Virginia Aquarium was a turning point, where Jack was proud and happy to have hemophilia. He was young - maybe 7? And he loooooved sharks. It was so magical to roll out our sleeping bags under the shark tank, he would've agreed to any disease. After that, he started talking about how great it was to have hemophilia, so he could do things like that event. Great Wolf Lodge events were also extremely meaningful for him.”
Why is participating in the walk important for your family?
“Raising money helps spread the story, put a face behind hemophilia (especially people who know Jack is leading a "normal" life), and connects the community with others. Hemophilia is so rare, many people don't know anyone with it until they meet Jack. I would like to raise enough for at least one camper to attend Camp Youngblood!”
|
|
August
First Landing State Park on Cape Henry in North Virginia Beach
September
Science Museum of Virginia in Richmond
Great Wolf Lodge in Williamsburg
September 20 - Women's Night Out
TBD - Richmond, RSVP Coming Soon
October
October 5 - 7 - Teen Retreat Weekend
Camp Holiday Trails in Charlottesville, RSVP Coming Soon
October 18 - Educational Dinner
TBD - Tidewater Region, RSVP Coming Soon
Robious Landing Park in Midlothian
|
|
Camp Youngblood at Camp Holiday Trails
|
A major highlight of the VHF summer calendar is Camp Youngblood at
Camp Holiday Trails
, a week-long overnight camp for children ages 7 – 17 with inherited bleeding disorders, their siblings, and children of members of the inherited bleeding disorder community. We have a wonderful partnership with Hemophilia Association of the Capital Area (HACA) and together we were able to send 66 campers this year - our biggest year yet!
This year's camp was held July 8th - 13th and campers enjoyed a week of "un-plugged" traditional camp activities, good food, time to hang out with other kids that face similar challenges, and the attention of caring counselors and staff. One of the surprise hits of the week was the dunk-tunk at carnival night! Carnival night is an opprtunity for counselors, camp youngblood sponsors, and campers to come together to play games and win prizes. The campers delighted in the opportunity to soak some of the HTC staff in attendance as well as some of their camp counselors.
Go here to see photos and videos of the great time that was had by all.
Thank you to our generous Camp Youngblood sponsors Accredo, Bayer, Bioverativ, CSL Behring, CVS Caremark RX, DrugCo Health, Hoos at Home, National Hemophilia Foundation, Novo Nordisk, Pfizer, and Shire.
Mark your calendars - Camp Youngblood 2019 will be held July 7th-12th and we hope to see you there.
|
|
Virginia Expands Medicaid!
|
|
On Thursday, June 7, 2018, Governor Northam signed a state budget that expanded Virginia's Medicaid program. Starting January 1, 2019, Medicaid will be available to eligible adult Virginians ages 19 - 64 who live in households earning ≤138% of the Federal Poverty Level ($28,676 for a family of three in 2018). Nearly 400,000 Virginians will be income-eligible.
Coverage will be comprehensive, and will include doctor, hospital and emergency services; prescription drugs; behavioral health and substance use services; and more.
|
|
VHF Volunteer Spotlight: Sasha Jean Noel
|
|
Sasha Jean-Noel has been involved with the Virginia Hemophilia Foundation (VHF) for almost 3 years! You’ve definitely seen her at events and behind the scenes helping make sure everything runs smoothly and pitching in wherever she is needed. Here’s what she had to say about being a volunteer with VHF:
“I volunteer with the Virginia Hemophilia Foundation to give back to the bleeding disorders community. This community is diverse, welcoming, and dedicated to advocacy. I like the fact that I work side-by-side with individuals affected by bleeding disorders and am able to hear firsthand accounts of how having a bleeding disorder has impacted their lives. I could not ask for a better community to volunteer with!”
Thanks for all you do Sasha! We appreciate your continued support and are so grateful!
Visit our website
to learn more about how YOU can become a volunteer for VHF and give back to your community. For information on upcoming events that we need day-of volunteers for, please visit us on
Volunteer Match
. We are always looking for new volunteers both inside and outside the bleeding disorders community, so please feel free to share!
|
|
Being Visible: Women With Hemophilia Conference
|
November 9 - 11, 2018 | Amway Grand Hotel, Grand Rapids, Michigan
A national conference hosted by Hemophilia Foundation of Michigan (HFM) for women and girls age 16 and older diagnosed with hemophilia A or B, or carriers who are symptomatic. An amazing weekend learning from national expert health care providers and connecting with other attendees who each bring their own unique wisdom and experience of living with hemophilia.
All interested participants are asked to APPLY for admittance to this conference starting August 21, 2018.
|
|
CHES Inhibitor Family Camp
|
September 28 - October 1, 2018 | The Painted Turtle, Lake Hughes, California
Comprehensive Health Education Services (CHES) was founded in 2009 and provides individuals with chronic medical conditions the support that allows them to assert their independence and the knowledge to more fully engage in their treatment. CHES Inhibitor Family Camp offers a full weekend of education, support, and fun designed specifically for children ages 6-18 with hemophilia and active inhibitors. Because CHES understands the value of having a tight-knit unit of support behind these children, Inhibitor Family Camp is also geared towards the entire immediate family.
|
|
HFA Young Adult Advocacy Summit
|
October 20 - October 23, 2018 | Washington, DC.
Hemophilia Federation of America (HFA) is excited to announce their second annual Young Adult Advocacy Summit! This national event will bring together young adults ages 18-30 years old with bleeding disorders for the four day advocacy summit. Participants will develop advocacy and leadership skills through interactive training with experts in policy, advocacy, and communications.
|
|
Make Your Move: Free Health Coach App
Join National Hemophilia Foundation (NHF) for an interactive, app-based, health and wellness program, the Make Your Move: Health Coach App. NHF is offering a special opportunity for members of the bleeding disorder community to get FREE access (usually more than $500) to an innovative app-based coaching and motivation research program.
There are a limited number of spaces available for this exclusive 26-week motivation and research program to improve fitness, motivation, and wellness.
|
|
|
|
|
|
|
