MEDICAL SYMPOSIUM WRAP UP

A major highlight of March was our annual Medical Symposium. The VHF Medical Symposium provides consumers with the knowledge needed to discuss new and current treatment options, have conversations around product safety and how to make tough decisions about medical care. With multiple tracks throughout the day, we started with a keynote presentation from Dr. Christopher Walsh from Cedar Sinai Medical Center while our kids and teens received education on bleeding disorders, advocacy and life transitions. That evening, participants attended a tour of CSL Plasma center in Richmond to learn more about the importance of plasma donations and how they help the bleeding disorders community. The next day started off with an advocacy breakfast, followed by a community event at Topgolf in Richmond. This educational event was a healthy way for members to get outside, learn something new and practice a safe physical activity.

Go  here  and  here  to view our generous Medical Symposium sponsors.

Thank you to our Community Event sponsors CSL Behring, DrugCo Health, Pfizer, Novo Nordisk, and Takeda.

FEATURED STORY OF HOPE: SOREN JOHNSON

Growing up in a family of hemophiliacs had its challenges, but Soren, 18, still felt empowered to lead a normal life. “My brother and I are both severe hemophiliacs and we both play basketball, baseball, swim, golf, and I personally have run track so there is no limit to what someone with hemophilia can do.”

Soren is grateful for the opportunities that have come from being involved with the Virginia Hemophilia Foundation since childhood – he and his brother both have attended Camp Youngblood at Camp Holiday Trails and can attest to the powerful relationships and bonds formed through that experience:

HACA/VHF ADVOCACY COMMITTEE VIRTUAL CHAT

Join the HACA/VHF advocacy committee as we present our first in a series of virtual chats. These chats will focus on advocacy topics relevant to the bleeding disorders community. During the first virtual chat, we will discuss the disposition of legislation we followed during the 2020 General Assembly session including bills we opposed and supported and we will also attempt to predict what might happen when the General Assembly returns on April 22nd. We will also spend some time talking about how COVID-19 is affecting you and yours as we maintain social distancing measures. All virtual chats will be recorded if you are unable to join us live online. Please join us!

Date: Wednesday, April 15

Time: 7:00 pm

Location: Online - When you register you will receive instructions on how to join in, either by video conference or by phone call.

RED TIE SOIREE UPDATE

We have made the decision to cancel our in-person spring fundraiser, The Red Tie Soiree. This is an important fundraiser for our organization, and we are working with the event committee on the possibility of organizing an online auction later in the year - we have some amazing auction items and do not want these to go to waste! Once those plans are set, we will be in touch and we hope you will support in any way you can.

You can follow updates on this and our other programs through our Facebook page or on our website. If you are able to, we could use your help if you would like to donate what you would have spent at this event! You can make a donation at https://vahemophilia.org/get-involved/ or host a Facebook Fundraiser if you wish to help.

HACA/VHF CAMP YOUNGBLOOD UPDATE

When: Sunday, July 5 – Friday, July 10, 2020

Where: Camp Holiday Trails, 400 Holiday Trails Ln., Charlottesville, VA 22903

Applications Due: April 30, 2020

At this point, no decisions have been made regarding summer sessions at Camp Holiday Trails and/or Camp Youngblood but the registration deadline has been extended to April 30th to give families more time to register. If you have applied you will be notified once any decisions have been made.

There are some new procedures for 2020, as well as the opportunity for Youngblood Family Camp following the summer camp session. Click the link below to more information and please read thoroughly before logging into the Camp Holiday Trails website. Note the new eligibility screening process and new application and medical form deadlines.

UNITE FOR BLEEDING DISORDERS WALK: REGISTRATION IS OPEN!

When: Sunday, October 25, 2020

Where: Stony Point Fashion Park, Richmond

We are still planning on our October 25th fundraising walk. Join us in person or virtually as we unite together for a special one-mile walk, program and fun fall festival at Stony Point Fashion Park in Richmond! You do not need to be present to fundraise and spread awareness for VHF and bleeding disorders - but we hope to see you there!

This event is free and open to everyone inside and outside the bleeding disorders community. Walk t-shirts will only be available to those who are registered and have raised a minimum of $25 by Thursday, October 16th. We have a fundraising goal of $25,000 from our participants and we need your help to get there! We encourage you to form a team and make your own special team shirts to walk together that morning!