VIRGINIA HEMOPHILIA FOUNDATION
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VHF
MONTHLY NEWS & UPDATES
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UNITE FOR BLEEDING DISORDERS: WALK UPDATE
Megan Schowengerdt | Development Director, VHF
It was a rainy fall day on Sunday, October 20th at our event, but we gathered and celebrated success together despite the weather and had a fantastic time! Thank you so much to all of you who braved the weather and traveled to our second annual Unite for Bleeding Disorders Walk-Richmond.
Go here to see photos from the event.
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2020 CAMP YOUNGBLOOD REGISTRATION NOW OPEN!
The Hemophilia Association of the Capital Area and Virginia Hemophilia Foundation are teaming up again for Camp Youngblood in 2020! The dates are Sunday, July 5 – Friday, July 10.
Go here to learn more.
NEW THIS YEAR: In order to make the registration process run more smoothly, the enrolling parent or guardian will fill out a short Camp Youngblood prescreening survey to determine eligibility. This is required for all applicants, even returning campers. The process was put into place to make sure everyone meets the eligibility criteria before filling out the lengthy application. The criteria is based on the HACA/VHF Camp Youngblood Application and Admission Guidelines –
you can find them here.
Camp staff will review each survey and those who meet the criteria will be sent a password to access the 2020 Camp Youngblood application. Those who do not meet the criteria will be notified as well. The Camp Youngblood application process is open enrollment and not first come first served. This will allow VHF, HACA, and CHT the chance to review applications and manage the roster according to the application/admission guidelines. All application deadlines must be adhered to in order to be considered.
Also New for 2020: We will also be offering a
Family Camp weekend at Camp Holiday Trails (CHT) that will take place Friday, July 10th – Sunday, July 12th, which is immediately after the summer camp session. Families will participate in the same fun activities as campers, stay in cabins and come to know the meaning of "camp magic" at CHT. If you are interested in registering for Family Camp, add all your family members to your account before starting the application, then select “Camp Youngblood & Youngblood Family Camp Weekend” as your session.
The application process is now open on the Camp Holiday Trails website,
go here to get started. The deadline for submitting applications is March 30, 2020, and all camp paperwork and medical assessment is due by April 30. These dates are earlier than in years past, which is why the application has opened earlier as well.
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ALASKA EXPLORATION
Max Kaiser | Terry Lamb Scholarship Recipient
On June 25th I departed on a trip to Alaska with my science teacher and several classmates. It was a 6 day adventure all about nature and conservation. Our first day was full of traveling, flying from Richmond to Anchorage with a stop in Austin, Texas and Seattle, Washington. Once we landed we had no time to rest, we were off to Potters Marsh. Potter's Marsh is one of the only marshes in Alaska. We were able to take in all the different aspects of the marsh - the tall grasses, lots of different birds, and bear tracks. We learned that the marsh was man made in order to make way for the railroad.
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NATIONAL MEETING EDUCATIONAL SCHOLARSHIP
The Virginia Hemophilia Foundation (VHF) is pleased to offer Educational Scholarships for National Meetings. 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. It is the premier opportunity for networking and support for individuals and families affected by inherited bleeding disorders.
2020 offers VHF constituents a unique opportunity to attend a national meeting within the Mid-Atlantic region. With the HFA Annual Symposium in Baltimore, MD you are only a short drive or train ride away from this important national educational opportunity. We hope that many of you will apply for this scholarship and VHF hopes to support several families.
VHF National Meeting Educational Scholarship applications for HFA Symposium are due Friday, November 15 at 11:59 pm!
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NATIONAL HEMOPHILIA FOUNDATION (NHF) BLEEDING DISORDERS CONFERENCE WRAP-UP
Spasojevich Family | VHF National Meeting Scholarship Recipients
NHF’s 71st Bleeding Disorders Conference was held October 3 - October 5, 2019 in Anaheim, California. The Spasojevich family was one of the recipients of the
VHF National Meeting Scholarship and enjoyed three days full of educational sessions and networking opportunities. This scholarship program is a wonderful opportunity for members of the Virginia bleeding disorders community to connect with others from across the country and learn more about new therapies on the horizon.
"My family and I truly appreciated our time at the Anaheim NHF Convention, which was our first time attending. Being a 4th generation family with hemophilia, and also in our 15th year of raising a child with hemophilia, we didn't expect to learn as much as we did. But we did! There was so much new information that will directly influence how we treat and view Jack's hemophilia. We are grateful for the experience. I highly recommend attending NHF, for families of any stage of the diagnosis." ~ Sarahbeth
"I really liked getting together with so many other teens at the conference who had many of the same struggles as me, and knowing that I wasn't alone in it was really cool. This being my first convention, I didn't really know what to expect, but I ended up learning a lot from all of the vendors and speakers there." ~Jack
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VOLUNTEER OF THE MONTH: AMY WALKER
Amy, a VHF constituent for 16 years, is a carrier with mild hemophilia, a mother of four children (two of them boys with severe hemophilia), and a dedicated volunteer with VHF. She is the Program Committee Chairperson, new family mentor and go-to nurse and infusion support educator at Camp Youngblood, Teen Retreat and First Step Programs. She also fills in as the VHF rep at educational dinners in the Hampton Roads area. You will see her and her family participating in numerous VHF events throughout the year – especially Richmond and Washington Days, the Walker family has a passion for advocacy and sharing their stories!
“I volunteer with VHF because the community has become our family. My joy is to see kids and families with more education, independence, and confidence in caring for their bleeding disorder. I am excited to support new families and help them see they are not alone.
Volunteering at Camp Youngblood is a meaningful way for me to give back to the VHF community. Seeing the campers infuse themselves for the first time is an amazing experience. I love seeing their happiness when they know they have "gotten the vein” and completed their factor infusion. I especially enjoy seeing the bond that the campers have with one another cheering each other on to get the Big Stick award. It truly is a magical experience!”
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Reminder: Marketplace Open Enrollment starts Friday, November 1st and lasts until December 15th.
Now is the time to visit
HealthCare.gov to get ready for this year’s Open Enrollment and review your 2020 health plan options.
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JOIN US AT AN UPCOMING EVENT
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EDUCATIONAL DINNER - CHESAPEAKE
When: Thursday, November 14th | 6:00 pm
Where: Cutlass Grille, 805 N Battlefield Blvd #101, Chesapeake, VA 23320
Topic: "Taking Control – Being More Active with Hemophilia" - Being more active is key with a bleeding disorder. There will also be discussion on how to better communicate with your doctor and loved ones.
Speaker: Linda L. Pollhammer, Patient Affairs Liaison | Pfizer
This event is open to VHF constituents that live in the Tidewater Region.
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WINTER GATHERING - RICHMOND
Come celebrate the winter season with your bleeding disorders community. There will be food, education and good times with your friends and family!
This event is limited to constituents that live within the VHF coverage area and their immediate family and/or household members. There is no fee to attend and space is limited.
When: Saturday, December 7th | 11:00 am
Where: Dave & Busters Richmond
RSVP by November 22nd
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WINTER GATHERING - VIRGINIA BEACH
Come celebrate the winter season with your bleeding disorders community. There will be food, education and good times with your friends and family!
This event is limited to constituents that live within the VHF coverage area and their immediate family and/or household members. There is no fee to attend and space is limited.
When: Saturday, December 7th | 11:00 am
Where: Dave & Busters Virginia Beach
RSVP by November 22nd
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ADVOCACY TRAINING AND RICHMOND DAYS
Advocacy Training and Richmond Days are an opportunity for people affected by inherited bleeding disorders in the Commonwealth of Virginia to advocate for issues that matter to them. During Richmond Days, the Virginia Hemophilia Foundation (VHF), in partnership with the Hemophilia Association of the Capital Area (HACA), schedules meetings with individual legislators that allow constituents to advocate and share their story. Dinner, childcare and overnight accommodations provided.
When: Sunday, January 19th - Monday, January 20th
Where: Omni Richmond, 100 South 12th St., Richmond, VA 23219
Advocacy Training Sunday, January 19th
1:45 PM – Registration | Magnolia Room at the Omni Richmond Hotel
Omni Richmond Hotel, 100 South 12th St., Richmond, VA 23219
Richmond Days Monday, January 20th – Martin Luther King, Jr. Day
7:30 AM – Breakfast | Magnolia Room at the Omni Richmond Hotel
8:30 AM – 11:30 AM – Meetings with Legislators | Pocahontas Building, 900 E. Main St., Richmond, VA 23219
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Check out our photos on
Flickr
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