2017 has been off to a busy start! We had one of our largest turn-outs ever for our annual Advocacy Training and Richmond Days, a great group gathered in Chesapeake to learn more about emotional health and well-being, and currently we are hard at work planning and organizing all the exciting educational program offerings for the rest of the year - visit our website to see our full 2017 calendar.

Bowling For Bleeding Disorders

Bowling for Bleeding Disorders Fundraiser is scheduled for Saturday, March 4th at 2 pm in both Richmond and Chesapeake. In order to bring awareness and attention to those living with an inherited bleeding disorder this event is hosted in March during Bleeding Disorder Awareness Month. Also  Bowling for Bleeding Disorders was developed to raise money to support Camp Youngblood at Camp Holiday Trails. 

Camp Youngblood is a week long  camp designed to promote fun and learning for children and teens whose lives are affected by bleeding disorders. This camp is offered at no cost to the campers, but it does cost VHF approximately $500 per camper for one week. Help us reach our goal of $5,000 in individual donations this year! Go HERE and register yourself or a team, create your fundraising page and share. If you are unable to attend you can still use the event link to donate toward the event.
Registration Fee: $25 per person 
Fee includes: 2 hours of bowling, shoe rental, t-shirt, food, treats, and more! Register by February 15th to secure your t-shirt order.

  • 16th - Women's Night Out "Advocating for Yourself as a Woman" and private cooking instruction at the Culinary Institute of VA RSVP (Norfolk)
  • 25th - 26th - Adult Retreat at Hyatt House at Short Pump Town Center RSVP (Richmond)

Advocacy Training and Richmond Days -
Event Highlights
Ann Kendall | VHF Member and Virginia Advocacy Workgroup Chair

Thank you to everyone that came to Advocacy Training and Richmond Days, January 15 - 16, 2017 - with 100 (including 40 children and teens) in attendance at the event, it was one of the largest advocacy training events ever for VHF. With a focus on access to health care for all Virginians, as well as HB 1755/SB 1408 Step Therapy as our main issues, Sunday's training session prepared everyone for Monday visits to General Assembly members. In all, VHF members visited with 16 senators and 19 delegates representing districts across the Commonwealth. 

Advocacy Training and Richmond Days - First Time Attendees
Coventry and Bartko Family | VHF Members

We recommend everybody attend this event! Attending for our first time, we were not sure what to expect. The educational portion of the event on Sunday, prepared us for our meeting with our legislators on Monday. It was a very educational experience for the parents and children. Our Senator and Delegate were very receptive to our initiative, HR Bill 1755, which is important to pass for all of us who are impacted by Hemophilia.

Educational Dinner - Chesapeake

On Thursday, January 26th almost 30 VHF members gathered at Cutlass Grille in Chesapeake to explore emotional well being in the bleeding disorders community. Nurse Educator, Theresa Coia, did an excellent job presenting an overview of mental health needs and looking for signs in both children and caregivers. Tips for self-care and resources for community support were shared and discussed. Thank you to our sponsor Pfizer.

Virginia Bleeding Disorders Program

Patients with an expensive, chronic illness such as hemophilia sometimes need help getting essential health care services. The Virginia Bleeding Disorders Program (VBDP) was developed by families with hemophilia through the Virginia Department of Health to provide such assistance.

Simply completing the one-page enrollment helps the VBDP help you! For further questions, please call 804-827-3306 or toll-free at 1-866- 228-2516.

Go HERE To Learn More And View The Full Flyer
Clearing A Path: 
Women Need a New Diagnosis
Christy Bergeon Burns 

"During The past twenty years, several workers have claimed that abnormal bleeding occurs, and significant prolongation of the coagulation-time can be demonstrated, in a proportion of the female carriers of haemophilia." 

This quotation may not strike some of our community advocates as particularly surprising, given the recent surge in advocacy efforts regarding the identification and treatment of "symptomatic carriers," that is, women who carry a mutation for hemophilia and have abnormal bleeding symptoms themselves. But what may surprise most advocates is that the quotation was drawn from a scientific article published about sixty-five years ago in an esteemed medical journal. The authors described a study in which they sought to identify a reliable method to measure this coagulation "defect" in known carriers (for example, women with more than one son with hemophilia). They reported bleeding symptoms in some of these carriers, such as prolonged bleeding after tooth extraction. Then, using various laboratory methods that were newly developed at that time, the authors observed abnormal clotting behavior in blood samples from 3 of the 21 known carriers. 

Your Voice Matters!

Project CALLS is the latest way that Hemophilia Federation of America (HFA) is listening to our community's needs. HFA has been able to turn the
results of their CHOICE survey into action with Project RED, and the Bleeders' Bill of Rights. Project CALLS is the next step in helping individuals with bleeding disorders to receive the best care possible.
Share your story through this very important initiative and be a part of a community that cares!

If you or a member of your family have been:
  • Denied services or have received an exception,
  • Forced by an insurance company to "fail" on a product before being allowed to use the product of your choice,
  • Mandated to a pharmacy that is not meeting your needs, and/or
  • Forced to go through a lengthy pre-/ prior-authorization process,
Project CALLS is for you!

To participate in Project CALLS, visit the HFA website www.hemophiliafed.org/project-calls

Calling All Men Age 50 Living with Hemophilia
National Hemophilia Federation (NHF) is conducting a survey that will help them better support older community members and their changing needs. 
If you are 50 or older with hemophilia then take the online survey or call 1-800-999-0913 to take it over the phone.* Two i-Pads will be raffled off to survey participants!
If you don't fit in that group but have loved ones that do, please pass this information on to them.  Names and contact information will not be linked to survey responses and will never be transferred or sold.

CDC Public Health Webinar On Blood Disorders

The Centers for Disease Control and Prevention (CDC), Division of Blood Disorders upcoming topic on its public health webinar series will focus entirely on evidence-based guidelines on hemophilia care. The webinar, "Evidence-based Guideline on Hemophilia Care: A Model for Rare Disease Guidelines," will be held on February 16th, 2017, from 2:00 - 3:00 pm. The CDC's public health webinar series on blood disorders provides evidence-based information on new research, interventions, emerging issues of interest in blood disorders, as well as innovative approaches in collaborations and partnerships.

This free webinar is targeted to public health professionals, clinicians and researchers who desire more information about hemophilia and blood disorders. 

Facts N' Factors | Virginia Hemophilia Foundation | 804-740-8643 | info@vahemophilia.org