VIRGINIA HEMOPHILIA FOUNDATION | VHF
MONTHLY NEWS & UPDATES
OCTOBER 2019
UNITE FOR BLEEDING DISORDERS WALK - ONLY DAYS AWAY!

When: Sunday, October 20th, 11:00 am 

Where: Robious Landing Park, Midlothian


Our Unite for Bleeding Disorders Walk is only days away on October 20th! We are so excited to have over 100 registered walkers and we need YOUR help to meet our participant fundraising goal of $16,000! So far our participants have raised $8,228 - thank you so much!

Shout out to our current top teams: The Pollock Boys, Spazvengers and Team Lukasz!

And a big thank you to current top fundraisers Temesha Pollock, Elizabeth Welshonce and Ethan Rohleder!


This year’s walk program will feature:

  • A walk for all fitness levels in a gorgeous park setting
  • Unite Pinwheel ceremony
  • DJ, FREE face painting, balloon artist, Star Wars characters and Buddy the Blood Drop!
  • Crowd favorite Jonathan the Juggler 
  • Carytown Burgers and Fries food truck (food for purchase, see below to earn yours for FREE)
  • Sweet treats by Krecek Kakes for all attendees
  • VCU Cheerleaders

Individual Fundraising Incentives:
  • $50 raised: Unite Walk PopSocket
  • $100 raised: Unite Walk insulated tumbler
  • $250 raised: Choice of Unite Walk insulated tumbler or phone charging power bank with the VHF logo!

Team Fundraising Incentives:
  • $500 raised: 4 free lunch vouchers to Carytown Burgers and Fries
  • $1000 raised: Team VIP Tent to gather at the walk, plus special goodies!
WAYS TO GET INVOLVED WITH ADVOCACY

Join the Advocacy Committee: Each month, our advocacy committee will host educational phone calls on topics of importance leading up to Richmond Days 2020. Topics set for inclusion this fall: pharmacy issues, Virginia’s rare disease caucus and “junk” insurance plans.

Become an Advocacy Ambassador: This fall, we will be developing a group of dedicated Advocacy Ambassadors to deepen our connections with local elected and appointed officials. Ambassadors will work to create relationships, provide introductions and establish local awareness of the bleeding disorders community. Activities for ambassadors may include:

  • Work to develop a local “Light it up Red” event
  • Attend in-district events for local and federal-level elected officials
  • Share advocacy talking points with fellow VHF members close to home

To learn more about the Advocacy Committee or Advocacy Ambassadors program, please contact Kelly Waters at kelly@vahemophilia.org or 804-740-8643.
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!
NATIONAL HEMOPHILIA FOUNDATION (NHF) NATIONAL YOUTH LEADERSHIP INSTITUTE (NYLI) APPLICATIONS ARE NOW AVAILABLE

NYLI offers young adults ages 18-22 in the bleeding disorders community the opportunity to learn valuable skills while giving back. Applications are due Wednesday, October 31, 2019 at 11:59pm! 

NYLI Eligibility Requirements:
  • High school graduate before December 31, 2019 AND be between the ages of 18-22
  • Have a bleeding disorder, or have a sibling with a bleeding disorder
  • Willing and able to travel to each of the trainings and program destinations
  • Available for regular communication via email, phone, and/or webinar
  • A U.S. resident
  • Available for the 1st-Year Leadership Training in New York City on January 5-8, 2020
WFH LEAD RESEARCH POINTS TO HIGHER GLOBAL HEMOPHILIA PREVALENCE

The article, “Establishing the Male Prevalence and Prevalence at Birth of Hemophilia: A Meta-Analytic Approach Using National Registries, appeared September 10, 2019 in Annals of Internal Medicine.

Source: WFH press release dated September 10, 2019

The World Federation of Hemophilia (WFH) recently announced the publication of a new study on the global prevalence of hemophilia, the results of which suggest a number that is significantly higher than the previous estimates. Findings from this eye-opening study were published in the Annals of Internal Medicine.
JOIN US AT AN UPCOMING EVENT
MEN'S RETREAT WEEKEND

New this year, in partnership with the Hemophilia Association of the Capital Area (HACA), we are offering a Men’s Retreat Weekend! Participants will enjoy education and time to gather and share with other people who encounter similar challenges.

When: Saturday, November 9th - Sunday November 10th

Where: Wintergreen Resort, 39 Mountain Inn Loop, Roseland, VA 22967

This retreat is open to men age 21 and up with inherited bleeding disorders and/or to men whose lives are impacted by a bleeding disorder (i.e. caregivers, spouses, immediate family members).

This retreat is for constituents that live in the HACA/VHF coverage area. There is a $25 registration fee that covers all educational programs and activities, scheduled meals and overnight accommodations provided throughout the weekend.
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.
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
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
Check out our photos on Flickr