Virginia Bleeding Disorders Foundation

HAMPTON – Community Event at Sandy Bottom Nature Park
2024-06-29 10:00 - 12:00 (America/New_York) | Sandy Bottom Nature Park, 1255 Big Bethel Road, Hampton, VA, 23669
VHF community events are social and educational gatherings that occur throughout the year. These events bring together the Virginia inherited bleeding disorders community and are an excellent opportunity for networking, support, increasing knowledge, and for fun for all ages. These programs are designed for VHF constituents (and their immediate family and/or household members only) lunch will be provided and there is no fee to attend.
What to Expect: A picnic style lunch, a playground for the kids, games, education, networking with new and old friends, and plenty of time to enjoy the park (we have reserved the lakeside pavillion shelter). We are also excited to have Tim G., a CSL Behring Gettin’ in the Game Athlete, join us for an informal presenation on how to stay active at every stage of life and then he will lead the group on a trail hike.
Sandy Bottom Nature Park Hampton’s premier park is a 456-acre environmental education and wildlife management facility. Born from borrow pits and garbage dumps, the park is truly a success story of reclamation of our natural resources. From the 10,000 square foot nature center overlooking Sandy Bottom Lake to the elusive creatures that inhabit the wetland marshes, there is something for everyone at Sandy Bottom Nature Park.
Thank you to our sponsors – CSL Behring, Genentech, Sanofi, and Takeda

Gettin' in the Game Junior National Championship (JNC) - Application Deadline
2024-06-23 | Virginia
VHF Nominee Application Deadline: 5:00 pm EST, Sunday, June 23, 2024
Gettin’ In The Game Junior National Championship (JNC)
Date: September 20 – 22, 2024
Location: Henderson, Nevada
Who is eligible: Children between 7–18 years of age with a bleeding disorder (nominees must be accompanied by a caregiver 25 years of age or older at the event. Due to state and federal laws, CSL is unable to permit healthcare professionals to attend.) Special consideration will be given to first time attendees, but all children who have attended in the past are welcome to apply again!
Cost: Free. CSL Behring will sponsor two chapter nominees and one accompanying caregiver for each nominee to participate in the program. This sponsorship will include the coordination and cost of airfare, ground transportation in Henderson, Nevada, and hotel arrangements (attendees will be responsible for transportation to/from their hometown airport). This event is limited to the nominee and one caregiver only. CSL is unable to accommodate additional family members at any JNC related events.
Program Description: Developed by CSL Behring, the Gettin’ in the Game Junior National Championship (JNC) was the first and is currently the only national sports competition designed specifically for the bleeding disorders community. The JNC features accomplished Gettin’ in the Game Athletes who themselves have been diagnosed with a bleeding disorder. Go here to learn more.
VHF (along with other chapters across the nation) have been given the opportunity to nominate up to two participants, girls and boys, each selected for either baseball, basketball, golf, or swimming. Go here to read about Matthew Lee, one of the 2023 VHF nominees, who was the national winner in swimming at the 2023 Gettin’ in the Game Junior National Championship (JNC)!
During the JNC program nominees will have the opportunity to:

Choose from FOUR sports – baseball, basketball, golf, and swimming.
Learn about the importance of physical fitness in managing a bleeding disorder and receive instructions on proper techniques and good form.
Show off their abilities in a national competition with fellow nominees from around the country.
Connect and build relationships with fellow members of the bleeding disorders community.

VHF Nominee Application Process:

Fill out the brief application form below.
The child applying will need to answer one essay question and provide a heartfelt answer to the question “Why do you love the sport you chose and/or why would you like to attend the JNC?” (Length should be age appropriate and around 1-2 paragraphs.)
Essays must be original and written solely by the child applying (please, no parental help writing the essay!)
Submit the application and essay by the deadline, 5:00 pm EST, Sunday, June 23, 2024.

For an idea of the program expectations go here to read the 2024 JNC nominee information packet.
If you have any questions please contact Kelly at info@vahemophilia.org or 804-740-8643.

*Cancelled* RICHMOND - Educational Dinner
2024-06-20 18:30 - 20:00 | The Grapevine, Greek and Italian Restaurant, 11055 Three Chopt Road, Richmond, VA, 23233
This dinner has been cancelled, sorry for any inconvience this may have caused! Please email info@vahemophilia.org or call 804-740-8643 if you have any questions.

NEWPORT NEWS – New Family Support And Education Program
2024-05-18 10:00 - 12:00 | Virginia Living Museum, 524 J. Clyde Morris Blvd., Newport News, Virginia, 23601
Join VHF and HTC staff for a program for new families! What to Expect: This program is designed to support families of infants and young children who have been diagnosed within the last 7 years with hemophilia and other inherited bleeding disorders with community connection and education. We will gather in a private meeting space for informal education, lunch, time for Q&A, networking with other parents and children, and free admission to the Virginia Living Museum.This program is designed for VHF constituents (and their immediate family and/or household members only) and there is no fee to attend.
Thank you to our program sponsors: CSL Behring, Genentech, VCU-HTC, and Takeda

NATURAL BRIDGE – Bleeding Disorders Awareness Education Celebration
2024-04-21 08:30 - 11:30 | Natural Bridge Historic Hotel, 15 Appledore Ln, Natural Bridge, VA, 24578, United States
To RSVP email heather@vahemophilia.org
The VHF Bleeding Disorders Awareness Education Celebration is an exciting new event that was designed to raise awareness, increase education, honor the hard work and dedication in the bleeding disorders community, and best of all CELEBRATE and enjoy time with friends and family in a unique setting!
What to expect: Check back here soon for more details!
Participation is open to those with an inherited bleeding disorder and their immediate family and/or household members who live within VHF territory as well as VHF donors, volunteers, friends and extended family.

Thank you to our generous sponsors:
GOLD SPONSOR
Takeda
CORPORATE SPONSORS
BioMarin, CSL Behring, DrugCo Health, Octapharma, and Sanofi
FRIEND SPONSORS
BioMatrix, and Cottrill’s Pharmacy

In-Person Events: Covid-19 Safety Guidance: For all in-person events VHF will follow CDC guidance for COVID-19 safety and prevention. This policy can be found here and will continue to be updated as CDC guidance changes. Please read and contact VHF with any questions or concerns at 804-740-8643 or info@vahemophilia.org.

SPONSORS AND PRESENTERS REGISTRATION - Annual Meeting in Natural Bridge
2024-04-20 08:30 - 16:00 | Natural Bridge Historic Hotel, 15 Appledore Ln, Natural Bridge, VA, 24578, United States
REGISTER HERE
We appreciate your interest and support of our 2024 Annual Meeting, contact Kelly Waters at kelly@vahemophilia.org or 804-740-8643 for more information about sponsorship. Closer to the date of the event we will send a detailed email to all registered industry supporters and presenters. This email will include the agenda, booth set up times, what to bring, how many people to expect, etc.
Overnight accommodations at The Natural Bridge Hotel & Conference Center are available on the nights of Friday, April 19th and Saturday, April 20th.

Saturday, April 20th (Tentative Timeline)
7:00 am – 8:00 am Exhibit set-up (for those that plan to arrive on Friday, April 19th there will be time to set-up your exhibit that evening)
8:30 am – 10:00 am Breakfast and visit exhibits
10:00 am – 4:00 pm Education presentations, visit exhibits, lunch and snack breaks, and more!
4:00 pm Meeting wrap-up

PLEASE NOTE: We will not make hotel reservations for speakers, Industry Agents OR Industry Agents who are Consumers. However, we do have a room block at The Natural Bridge Hotel & Conference Center and they will extend the group rate of $129. There is a limited number of these rooms and they will be first come first served. If you run into any issues, please do not hesitate to reach out to heather@vahemophilia.org.
How to reserve your room (Room block will close Monday, March 18th):
To reserve over the phone, please call the hotel at 540-291-2121 and reference the following information:

Group Name: VHF 2024 Annual Education Meeting
Group Code: 041924VHF
Event Dates: April 19, 2024 – April 21, 2024

To book online, please visit the following link: https://naturalbridgeva.com/natural-bridge-va-lodging/

For Industry Agents who are Consumers and a VHF Constituent – How to register your family: If your family members plan to attend the meeting go here to register them. As a reminder we still ask that you register yourself as an industry representative and make your own hotel reservation.
VHF makes every effort to ensure that the members of the bleeding disorders community are always able to make a clear distinction between its own activities and those of Industry. Further, it is essential that we create beneficial and pressure – free experiences for our community members, and to protect participants in VHF events and programs. Accordingly, VHF has developed a set of standards. Go here to read VHF’s Industry Standards.
Thank you for your continued support!

COMMUNITY MEMBER REGISTRATION – Annual Meeting in Natural Bridge
2024-04-19 - 2024-04-21 | Natural Bridge Historic Hotel, 15 Appledore Ln, Natural Bridge, VA, 24578, United States
RSVP Deadline: Monday, March 18, 2024
VHF’s Annual Meeting brings together the inherited bleeding disorder community to share information on a wide variety of topics and it is a great opportunity for networking and support for individuals and families.
Annual Meeting – What To Expect: The event will kick off Friday night with an educational dinner and a family fun movie night. Then we will begin Saturday morning with breakfast and time to visit with our generous industry sponsors to learn about the latest treatments and therapies, followed by education sessions on topics such as research and innovation, benefits of Tai Chi and meditation, Lyman Fisher Scholarship winners recognition, VHF chapter updates, and on-site childcare with A Helping Hand and children and teen programming with Camp Holiday Trails. Stay tuned for more information on the Bleeding Disorders Awareness Education Celebration that will take place on Sunday, April 21st!
Overnight accommodations at The Natural Bridge Hotel & Conference Center are available on the nights of Friday, April 19th and Saturday, April 20th.
Educational programs, scheduled meals, community events, and Friday & Saturday night overnight accommodations are provided for constituents that live in the VHF coverage area. There is a $25 registration fee per household » Go here to pay your registration fee
*If you are a constituent that lives outside of the VHF coverage area and you are interested in registering for this meeting, please email heather@vahemophilia.org for more information.
Friday, April 19th – Tentative Schedule (Agenda Coming Soon!):
7:00 pm Educational Dinner
8:00 pm Family Friendly Movie

Saturday, April 20th
8:30 am – 10:00 am Breakfast and visit exhibits
10:00 am – 4:00 pm Education presentations, visit exhibits, lunch and snack breaks, and more!
4:00 pm Meeting wrap-up
6:00 pm World Hemophilia Day – Community Event and Dinner

Sunday, April 21st
8:30 am to 9:30 am Bleeding Disorders Awareness Month Celebration Breakfast at The Natural Bridge Hotel
Time and Location TBD – Bleeding Disorders Awareness Education Celebration *Community celebration event is optional and is not a part of the annual meeting.

Thank you to our current Annual Meeting sponsors –
PREMIER SPONSORS

CSL Behring
Pfizer
Sanofi

PLATINUM SPONSORS

Accredo
Bayer
Biomarin
Genentech
Novo Nordisk
Takeda

CORPORATE SPONSORS

BioMatrix
Children’s Hospital of The King’s Daughter’s (CHKD) and the University of Virginia’s (UVA) 340B Factor Program
Cottrill’s Pharmacy
CVS
DrugCo Health
Octapharma
Optum
Superior Biologics
VCU-HTC

FRIEND

Hemophilia Alliance

In-Person Events: Covid-19 Safety Guidance: For all in-person events VHF will follow CDC guidance for COVID-19 safety and prevention. This policy can be found here and will continue to be updated as CDC guidance changes. Please read and contact VHF with any questions or concerns at 804-740-8643 or info@vahemophilia.org.

2024 Camp Youngblood Application Due!
2024-04-10 | Virginia
Pre-Screening Link
*Wednesday, April 10, 2024: Registration will close, and no other applicants will be accepted. All parts of the online camp application must be complete.*
The Virginia Hemophilia Foundation (VHF), the Hemophilia Association of the Capital Area (HACA), and Camp Holiday Trails (CHT) are teaming up again for Camp Youngblood (CYB) in 2024!
Camp Youngblood is a week-long overnight camp at CHT for children ages 7-17 with inherited bleeding disorders, their siblings, and children of members of the inherited bleeding disorder community that reside within the VHF or HACA coverage area. Kids enjoy a week of fun and learning with others that are faced with similar challenges and life experiences. Go here to learn more about the admission guidelines.
Dates: Sunday, July 14 – Friday, July 19, 2024
NEW THIS YEAR: Friday, July 19, will be “CYB Family Friday.” Camper families are invited to join in on all the fun starting at 9 a.m. Lunch will be provided by CHT, and everyone will depart at 2 p.m. During this time, there will be a mini “family day camp” that will allow campers and their families a glimpse of Camp Magic together! VHF/HACA are looking into providing an overnight stay at a hotel close to CHT on that Thursday, July 18; in the pre-screening survey, please let us know if this would be of interest to you and we will be in touch with more details.
Location: Camp Holiday Trails, 400 Holiday Trails Ln, Charlottesville, VA 22903
Thank you to our Camp Youngblood sponsors: Bayer, CSL Behring, Genentech, Grifols, Novo Nordisk, Takeda, and VCU-HTC
Thank you to our Camp Youngblood Family Education sponsors: CSL Behring, Genentech, Novo Nordisk, and Takeda

APPLICATION PROCESS
Open Enrollment Application: 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. *Must adhere to all application deadlines to be considered* Go here to learn more about the admission guidelines.
1. Pre-screening – This is required for ALL applicants, even returning campers.
The enrolling parent/guardian will fill out the short pre-screening survey to determine eligibility » Go here to fill out the pre-screening survey
Within one week of filling out the pre-screening survey you will receive an email from either VHF or HACA, if you do not, please email Heather at heather@vahemophilia.org or 804-740-8643.
If you are NOT eligible you will receive an email from either VHF or HACA letting you know the reason you do not meet the eligibility requirements and a link to the other summer camp offerings from CHT.
If you ARE eligible, you will receive an email from either VHF or HACA with a link to the full CYB application and other important details.
2. Registration –
Use the link provided in the email response to your pre-screening survey and fill out the full CYB application form.
The form and the application process are managed by CHT, if you have questions or concerns regarding this part of the process contact CHT directly at program@campholidaytrails.org or 434-977-3781.
Wednesday, April 10, 2024: Registration is closed, and no other applicants will be accepted. All parts of the online camp application must be complete.
3. Submit All Paperwork and Medical Forms –
Tuesday, May 28, 2024: All camp paperwork must be finalized and medical assessment due – firm deadline.
4. Confirmation and Registration Fee –
Thursday, May 30, 2024: VHF & HACA will email their respective campers and request written confirmation via email response of attendance or camper(s) will be removed from roster. Before removing from roster, every effort is made to contact families (text, phone call, individual follow up email). Registration fee link will be included in this email, to be collected individually by VHF/HACA. Registration fee is $25 per camper. Registration Fee Deadline is Monday, June 3, 2024.
5. Acceptance Email!
Friday, June 7, 2024: CHT sends welcome email to all campers with confirmed spots.

CHT COVID Vaccination Policy Update: CHT consulted with their Medical Director, Dr. Ina Stephens and CHT’s Medical Advisory Committee (MAC), and they have decided to update their COVID protocols for Summer 2024. CHT will no longer require campers, staff, or volunteers to be vaccinated against COVID. They will continue to monitor COVID and community health issues within their region and the impact on medically complex children. They strongly recommend families to speak with their healthcare providers about vaccinating their child against COVID and any other recommended pediatric immunizations.
Please rest assured that they will continue to implement rigorous health and safety measures – including enhanced cleaning protocols, monitoring symptomatic individuals, and requiring all campers, staff, and volunteers to complete a rapid COVID test during check-in on the first day of CYB. The Med Team and year-round staff are well trained to monitor and respond to any potential health concerns and they will remain vigilant in their efforts to create a healthy and secure environment.
We understand that this update may raise questions, and CHT encourages you to reach out to their Director of Programs, Caitlin Carroll, MSW at program@campholidaytrails.org.

Lyman Fisher Scholarship Application Deadline
2024-03-29 | Virginia
APPLICATION PROCEDURE & DEADLINES
Application Deadline: 11:59 pm (EST), Friday, March 29, 2024
How to Apply: Applications can be completed using our online application form or you can download the paper application form and email the application to info@vahemophilia.org.
» Go Here to fill out the application online
» Go Here to download the paper application
Letters of Recommendation: You will need at least two letters of recommendation from persons who are not family members. These are to be emailed separately to info@vahemophilia.org by the deadline.

One letter should be from an HTC provider, nurse, social worker, or someone who knows you well from the bleeding disorders community.
The other letter could be from your scout leader, minister, teacher, employer, guidance counselor, coach, etc.

Applications and/or supporting documents received after the deadline will not be considered.

ELIGIBILITY & AWARD
Scholarship Eligibility: Individuals living with an inherited bleeding disorder, their sibling or their parents who live in the territorial jurisdiction of VHF, which includes the State of Virginia, with the exception of the following: The cities of Alexandria, Fairfax, Falls Church, Herndon, Manassas, and Vienna and the counties of Arlington, Fairfax, Fauquier, Loudon, Prince William and Stafford.
Scholarship applicants must have participated in VHF activities.
Scholarship Award: Scholarships are one-year awards in the amount of $2,000 for a full academic year. While at least two scholarships are available each year, VHF is not obligated to award scholarships in a given year. The scholarships may be used at any accredited nonprofit college, university, or vocational/technical school in the United States and are to be applied toward a student’s educational expenses.
A student who receives an award one year may reapply in later years but winning a scholarship in one year does not necessarily mean that the student will win in a later year. Also, a student who applies in one year and does not receive an award is eligible to apply the following year for the scholarship.
Payment of Scholarship Funds: Scholarship payments are not distributed directly to an individual, but are made via scholarship checks, payable to the schools. VHF staff will work with the award recipient(s) to process the scholarship funds.

RESPONSIBILITIES OF RECIPIENTS
Scholarship recipients must enroll as a college student in the fall of the year in which the scholarships are awarded and continue in school for the entire academic year without interruption, barring illness, emergency, or military service. If a scholarship recipient leaves school during the scholarship period, VHF may ask for reimbursement of scholarship funds. Scholarship recipients are responsible for making certain that their scholarship checks are delivered to their colleges.

SCHOLARSHIP BACKGROUND
The Lyman Fisher Scholarship was established to honor Dr. Lyman Fisher, a teacher, researcher, and clinician in hemostasis. For many years, he directed the adult hemophilia program for Virginia. He will be remembered for his steadfast commitment to his patients and students, his respect for those who served under him, his community service and his affection for his family.

WINCHESTER – Bleeding Disorders Awareness Month Educational Dinner
2024-03-19 18:30 - 20:00 | Village Square Restaurant, 103 N Loudoun St, Winchester, Virginia, 22601, United States
RSVP Here!
Come celebrate Bleeding Disorders Awareness Month with your VHF community. There will be food, education, and community building! Dinner will be provided and there is no fee to attend. This event is for VHF constituents (and their immediate family and/or household members only.)
The topic will be: Expect the Unexpected – Prepare for Anything
Emergency room staff, including physicians, may have little experience in the management of patients with bleeding disorders because they are rare conditions. This presentation will help you avoid and prepare for a possible trip to the ER, anytime, anywhere—even when traveling or during a natural disaster.
Speaker: Morgan Cook, Community Education Specialist, Rare Disease – Hematology, Takeda

Thank you to our sponsor Takeda.
Space is limited and priority will be given to those members that live in the Shenandoah Region.

In-Person Events: Covid-19 Safety Guidance: For all in-person events VHF will follow CDC guidance for COVID-19 safety and prevention. This policy can be found here and will continue to be updated as CDC guidance changes. Please read and contact VHF with any questions or concerns at 804-740-8643 or info@vahemophilia.org.

RICHMOND – Bleeding Disorders Awareness Month Educational Lunch with VCU!
2024-03-16 12:00 - 13:30 | Virginia
This event has been cancelled.
Come celebrate Bleeding Disorders Awareness Month with your VHF community and staff from VCU-HTC. There will be food, education, and community building! This event is for VHF constituents (and their immediate family and/or household members only.) Lunch will be provided and there is no fee to attend.
The topic will be: Insurance Updates
Speaker: Lauren Dunn, MSW, Clinical Social Worker, Central VA Center for Coagulation Disorders at VCU Health, Virginia Bleeding Disorders Program (VBDP) Health Insurance Consultant

Space is limited and priority will be given to those members that live in the Central Virginia Region.

In-Person Events: Covid-19 Safety Guidance: For all in-person events VHF will follow CDC guidance for COVID-19 safety and prevention. This policy can be found here and will continue to be updated as CDC guidance changes. Please read and contact VHF with any questions or concerns at 804-740-8643 or info@vahemophilia.org.

ROANOKE - Bleeding Disorders Awareness Month Educational Dinner
2024-03-14 18:30 - 20:00 | Hotel Roanoke & Conference Center, 110 Shenandoah Ave NW, Roanoke, VA, 24016, United States
RSVP Here!
Come celebrate Bleeding Disorders Awareness Month with your VHF community. There will be food, education, and community building! Dinner will be provided and there is no fee to attend. This educational dinner for VHF constituents (and their immediate family and/or household members only.)
The topic will be: Drug Discovery & Beyond: How Scientists and the FDA Research and Evaluate New Treatments for You
Learn how new treatments are discovered and evaluated in this easy-to-understand presentation.
Speaker: Stephanie Torres, Sr. Account Manager, Mid-Atlantic, Hemophilia Gene Therapy

Space is limited and priority will be given to those members that live in the South West Virginia Region.
Thank you to our sponsor BioMarin.

In-Person Events: Covid-19 Safety Guidance: For all in-person events VHF will follow CDC guidance for COVID-19 safety and prevention. This policy can be found here and will continue to be updated as CDC guidance changes. Please read and contact VHF with any questions or concerns at 804-740-8643 or info@vahemophilia.org.

VIRGINIA BEACH - Bleeding Disorders Awareness Month Dinner with CHKD!
2024-03-13 18:15 - 20:00 | Apex Entertainment Virginia Beach, 4621 Columbus St #100, Virginia Beach, Virginia, 23462
RSVP Here!
Come celebrate Bleeding Disorders Awareness Month with your VHF community and staff from CHKD-HTC. There will be food, education, community building and bowling – a great way for people with bleeding disorders and the whole family to have fun and get moving!
This event is for VHF constituents (and their immediate family and/or household members only.) Dinner, arcade cards, and bowling will be provided and there is no fee to attend.

Space is limited and priority will be given to those members that live in the Hampton Roads Region.

In-Person Events: Covid-19 Safety Guidance: For all in-person events VHF will follow CDC guidance for COVID-19 safety and prevention. This policy can be found here and will continue to be updated as CDC guidance changes. Please read and contact VHF with any questions or concerns at 804-740-8643 or info@vahemophilia.org.

RICHMOND – Bleeding Disorders Awareness Month Community Event at Topgolf
2024-03-03 11:00 - 14:00 | Topgolf Richmond, 2308 Westwood Ave, Richmond, Virginia, 23230
RSVP Here!
Get active with your bleeding disorders community and help us to tee off Bleeding Disorders Awareness Month! Join VHF on Sunday, March 3rd in RICHMOND for education, celebration, community building and opportunities to enhance health and fitness at Richmond Topgolf. We look forward to exploring how you can take charge of your bleeding disorder and life, while having fun learning about the game of golf.
Event is free – lunch and two hours of golf will be provided. Participation is limited to those with an inherited bleeding disorder and their immediate family and/or household members who live within VHF territory.
With special guest Perry Parker!
Join Pro Golfer Perry Parker as he discusses finding your passion and working hard to meet your goals. Perry is a patient advocate for CSL Behring, who has taken part in three U.S. Opens and won five times on the Canadian Tour in a more than 30 years as a professional golfer. Perry continues to be active on the Australian Legends Tour and European senior tours. He also hosts an annual clinic for kids taking part in CSL Behring’s Gettin’ in the Game℠ Junior National Championship, a sports competition for kids and teens with bleeding disorders. Perry also will provide some golf tips at the driving range.

Thank you to our generous sponsors: BioMarin, CSL Behring, Genentech, Novo Nordisk, and Sanofi

In-Person Events: Covid-19 Safety Guidance: For all in-person events VHF will follow CDC guidance for COVID-19 safety and prevention. This policy can be found here and will continue to be updated as CDC guidance changes. Please read and contact VHF with any questions or concerns at 804-740-8643 or info@vahemophilia.org.

VIRGINIA BEACH – Bleeding Disorders Awareness Month Community Event at Topgolf
2024-03-02 11:00 - 14:00 | Topgolf Virginia Beach, 5444 Greenwich Road, Virginia Beach, VA, 23462, United States
RSVP Here!
Get active with your bleeding disorders community and help us to tee off Bleeding Disorders Awareness Month! Join VHF on Saturday, March 2nd in VIRGINIA BEACH for education, celebration, community building and opportunities to enhance health and fitness at Virginia Beach Topgolf. We look forward to exploring how you can take charge of your bleeding disorder and life, while having fun learning about the game of golf.
Event is free – lunch and two hours of golf will be provided. Participation is limited to those with an inherited bleeding disorder and their immediate family and/or household members who live within VHF territory.
With special guest Perry Parker!
Join Pro Golfer Perry Parker as he discusses finding your passion and working hard to meet your goals. Perry is a patient advocate for CSL Behring, who has taken part in three U.S. Opens and won five times on the Canadian Tour in a more than 30 years as a professional golfer. Perry continues to be active on the Australian Legends Tour and European senior tours. He also hosts an annual clinic for kids taking part in CSL Behring’s Gettin’ in the Game℠ Junior National Championship, a sports competition for kids and teens with bleeding disorders. Perry also will provide some golf tips at the driving range.

Thank you to our generous sponsors: BioMarin, CSL Behring, Sanofi, Superior Biologics, and Takeda
Thank you to our Top Golf 2 hour – unlimited gameplay sponsors Colburn-Keenan Foundation, Inc.

In-Person Events: Covid-19 Safety Guidance: For all in-person events VHF will follow CDC guidance for COVID-19 safety and prevention. This policy can be found here and will continue to be updated as CDC guidance changes. Please read and contact VHF with any questions or concerns at 804-740-8643 or info@vahemophilia.org.

WILLIAMSBURG - Women's Retreat
2024-02-10 - 2024-02-11 | The Williamsburg Lodge, 310 South England Street, Williamsburg, VA, 23185, United States
This event is full. Please email heather@vahemophilia.org to be added to the waitlist.
This rejuvenating weekend retreat invites women affected and connected to inherited bleeding disorders to join together for education and to develop community connections. This retreat is open to women aged 21 and up with inherited bleeding disorders/carriers and/or to women whose lives are impacted by a bleeding disorder (i.e. caregivers, spouses, immediate family members). This retreat is open to constituents that live in the VHF coverage area.
There is a $25 registration fee for this retreat. This fee will go toward the cost of the retreat and includes access to educational programs, scheduled meals and overnight accommodations provided throughout the weekend. After you RSVP you will receive a separate confirmation email from heather@vahemophilia.org with a link to pay the registration fee. The deadline for registration and payment is January 19, 2024.
Tentative Agenda:
Saturday, February 10, 2024
10:00 am Arrival, welcome, refreshments
10:30 am Icebreaker
11:00 am Session #1
12:00 pm Yoga
12:30 pm Lunch
1:30 pm Session #2
3:00 pm Service project
4:00 pm Break, check in to hotel
5:00 pm Dinner (TBD)
Thank you to our Women’s Retreat sponsors: CSL Behring, Genentech, and Takeda

In-Person Events: Covid-19 Safety Guidance: For all in-person events VHF will follow CDC guidance for COVID-19 safety and prevention. This policy can be found here and will continue to be updated as CDC guidance changes. Please read and contact VHF with any questions or concerns at 804-740-8643 or info@vahemophilia.org.

Richmond Days
2024-01-29 09:00 - 10:30 | General Assembly Building, 201 North 9th St., Richmond, 23219, United States
RSVP HERE

Richmond Days is back! Join VHF, the Hemophilia Association of the Capital Area (HACA), and Healthcare for All Virginians (HAV) Coalition for an opportunity for those interested in access to quality healthcare to meet with their state legislators to advocate for issues that are important to our community.Open to all community members.
What to Expect: We have reserved the 7th Floor House South Meeting Room in the General Assembly building for breakfast from 9:00 am – 10:30 am. During that time frame we will try to schedule two in-person legislative visits for you – one with your State Senate office and one with your State Delegate office. There will be other advocates there that may attend the meeting with you and there may opportunities to join other scheduled legislative visits as well. For more details on how to prepare for your visits and on our 2024 legislative priorities, plan to attend the VIRTUAL Advocacy Education Training on Tuesday, January 23rd at 7:00 pm (go here to register.) Limited hotel rooms are available for VHF/HACA community members on the night of Sunday, January 28, 2024.
» Go here to download the 2024 VHF Advocacy Calendar
Thank you to our sponsors: CSL Behring, Pfizer, and Takeda

In-Person Events: Covid-19 Safety Guidance: For all in-person events VHF will follow CDC guidance for COVID-19 safety and prevention. This policy can be found here and will continue to be updated as CDC guidance changes. Please read and contact VHF with any questions or concerns at 804-740-8643 or info@vahemophilia.org.

VIRTUAL - 2024 Advocacy Education Training
2024-01-23 19:00 - 20:00 | Zoom
RSVP HERE

Join VHF, the Hemophilia Association of the Capital Area (HACA), and the Healthcare for All Virginians (HAV) Coalition for a virtual advocacy education training program that will focus on the 2024 Virginia General Assembly. Join in and hear details about proposed legislation and state policy issues that focus on access to quality healthcare.This training will be in preparation for Richmond Days but you do not have to be registered for Richmond Days to participate. Open to all community members.
This session is free and open to anyone interested in learning more about advocacy and how it relates to the Virginia inherited bleeding disorders community.
» RSVP HERE once you RSVP you will receive the zoom link separately via email from heather@vahemophilia.org.
» Go here to download the 2024 VHF Advocacy Calendar

As we gather virtually to discuss, share and learn, we ask that all Virginia Hemophilia Foundation (VHF) virtual program participants be thoughtful in their interactions and follow video meeting etiquette and rules of engagement. Disruptions to a session may lead to the removal and/or disabling of the participant’s video and microphone for part of or for the entire session. Thank you for helping VHF ensure a safe, productive, and welcoming environment for all meeting participants and staff. »Go here to read video meeting etiquette and rules of engagement.

VIRTUAL - VHF/HACA Camp Youngblood Information Session
2024-01-18 19:00 - 20:00 | Zoom
REGISTER HERE

Are you thinking about sending your child to Camp Youngblood at Camp Holiday Trails (CHT) for the first time in 2024, have questions, or would you just like a refresher on the camp experience? Join the Hemophilia Association of the Capital Area (HACA), CHT, and VHF for a virtual information session via Zoom on Thursday, January 18, at 7 pm to learn more about Camp Youngblood – even if you aren’t quite ready to send your kids this year.
What to expect: Staff from CHT will talk more about camp activities and facilities; longtime Camp Youngblood parents will share their experiences with sending their kids to camp, and staff from VHF and HACA will be available to answer any additional questions. This virtual session will be a great opportunity to learn more and get all your questions answered in real time!
Camp Youngblood is a week-long overnight camp at Camp Holiday Trails (CHT) for children ages 7-17 with inherited bleeding disorders, their siblings, and children of members of the inherited bleeding disorder community that reside within the VHF or HACA coverage area.
» Go here to learn more about the Camp Youngblood registration process
» REGISTER HERE Once you RSVP you will receive the zoom link separately via email from heather@vahemophilia.org.

As we gather virtually to discuss, share and learn, we ask that all Virginia Hemophilia Foundation (VHF) virtual program participants be thoughtful in their interactions and follow video meeting etiquette and rules of engagement. Disruptions to a session may lead to the removal and/or disabling of the participant’s video and microphone for part of or for the entire session. Thank you for helping VHF ensure a safe, productive, and welcoming environment for all meeting participants and staff. Go here to read video meeting etiquette and rules of engagement.

VIRTUAL – Virginia General Assembly Weekly Check In
2024-01-16 - 2024-03-05 | Zoom
RSVP HERE

Join VHF & the Hemophilia Association of the Capital Area (HACA) for an informal, virtual General Assembly check-in. We will gather to get an overview of the past week’s events in the Virginia General Assembly and get insight from our advocacy consultant, Becky Bowers-Lanier, on what to look for, trends and any actions that will need to be taken about proposed legislation of interest to the bleeding disorders community. These check-ins are open to all community members.
Please note that these are informal weekly check-ins and if you register you are not required to attend all dates listed – feel free to join us for one session or for all!
WEEKLY CHECK IN DATES:
Tues., Jan 16, 2024 4:30 PM
Tues., Feb 6, 2024 4:30 PM
Tues., Feb 13, 2024 4:30 PM
Tues., Feb 20, 2024 4:30 PM
Tues., Feb 27, 2024 4:30 PM
Tues., March 5, 2024 4:30 PM
» RSVP HERE Once you RSVP you will receive a zoom link separately via email from heather@vahemophilia.org – you will use the same link each week.
» Go here to download the 2024 VHF Advocacy Calendar

As we gather virtually to discuss, share and learn, we ask that all VHF virtual program participants be thoughtful in their interactions and follow video meeting etiquette and rules of engagement. Disruptions to a session may lead to the removal and/or disabling of the participant’s video and microphone for part of or for the entire session. Thank you for helping VHF ensure a safe, productive, and welcoming environment for all meeting participants and staff. Go here to read video meeting etiquette and rules of engagement.

RICHMOND Winter Gathering
2023-12-09 10:00 - 12:00 | Peak Experiences – Midlothian, 11421 Polo Circle, Midlothian, VA, 23113, United States
RSVP HERE!
Come celebrate the winter season with your bleeding disorders community at Peak Experiences in MIDLOTHIAN. There will be food, education, community building and try out recreational indoor rock climbing – a great way for people with bleeding disorders and the whole family to have fun, build confidence and stay in shape!
For more information about rock climbing and bleeding disorders check out this Hemaware article Climbing the Walls: Indoor rock climbing offers fun and fitness.
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.
RSVP BY NOVEMBER 27TH FOR MIDLOTHIAN (RICHMOND AREA) WINTER GATHERING

Thank you to our sponsors: CSL Behring, Sanofi, and Takeda
Thank you to our Family Fun and Connections Sponsor Colburn-Keenan Foundation for providing the rock climbing passes!

In-Person Events: Covid-19 Safety Guidance: For all in-person events VHF will follow CDC guidance for COVID-19 safety and prevention. This policy can be found here and will continue to be updated as CDC guidance changes. Please read and contact VHF with any questions or concerns at 804-740-8643 or info@vahemophilia.org.

VIRGINIA BEACH Winter Gathering
2023-12-08 18:30 - 20:30 | Latitude Virginia Beach, 4554 Virginia Beach Blvd Ste 970, Virginia Beach, VA, 23462, United States
RSVP HERE!
Come celebrate the winter season with your bleeding disorders community at Latitude VIRGINIA BEACH. There will be food, education, community building and try out recreational indoor rock climbing – a great way for people with bleeding disorders and the whole family to have fun, build confidence and stay in shape!
For more information about rock climbing and bleeding disorders check out this Hemaware article Climbing the Walls: Indoor rock climbing offers fun and fitness.
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.
RSVP BY NOVEMBER 20TH FOR VIRGINIA BEACH WINTER GATHERING

Thank you to our sponsors: CSL Behring, Sanofi, and Takeda
Thank you to our Family Fun and Connections Sponsor Colburn-Keenan Foundation for providing the rock climbing passes!

In-Person Events: Covid-19 Safety Guidance: For all in-person events VHF will follow CDC guidance for COVID-19 safety and prevention. This policy can be found here and will continue to be updated as CDC guidance changes. Please read and contact VHF with any questions or concerns at 804-740-8643 or info@vahemophilia.org.

*CANCELLED* LYNCHBURG Winter Gathering
2023-12-01 18:30 - 20:30 | Virginia
*THIS EVENT HAS BEEN CANCELLED* Please email info@vahemophilia.org if you have any questions.

VIRTUAL – VHF/HACA Advocacy Stakeholder and Education Meeting
2023-11-09 16:00 - 18:00 | Zoom
RSVP HERE
Join constituents, advocacy committee members, and community stakeholders from throughout Virginia for a virtual education meeting that will cover a wide range of advocacy topics relevant to the bleeding disorders community!
MEETING AGENDA
Virginia Bleeding Disorders Program Update (VBDP) Erika J. Martin, MT (ASCP), Research Associate Professor, Program Manager and Special Projects & Committee Lead- Virginia Bleeding Disorders Program, Regulatory Coordinator- Central Virginia Center for Coagulation Disorders, Director- VCU Coagulation Advancement Laboratory
State Update AND What Can We Expect in 2024 General Assembly Becky Bowers-Lanier, VHF/HACA Advocacy Consultant and Freddy Mejia, Deputy Director of Policy at The Commonwealth Institute
Federal Update Miriam Goldstein, J.D, Acting VP Public Affairs at Hemophilia Federation of America (HFA) and Matt Delaney, Government Relations Specialist at National Bleeding Disorder Foundation (NBDF)
» RSVP HERE Once you RSVP you will receive the zoom link separately via email from heather@vahemophilia.org.

Thank you to our sponsors:
Genentech
Pfizer
PhRMA
Takeda
National Bleeding Disorders Foundation (NBDF)

As we gather virtually to discuss, share and learn, we ask that all Virginia Hemophilia Foundation (VHF) virtual program participants be thoughtful in their interactions and follow video meeting etiquette and rules of engagement. Disruptions to a session may lead to the removal and/or disabling of the participant’s video and microphone for part of or for the entire session. Thank you for helping VHF ensure a safe, productive, and welcoming environment for all meeting participants and staff. Go here to read video meeting etiquette and rules of engagement.

STAUNTON - Adult Retreat Weekend
2023-11-04 10:00 - 2023-11-05 11:00 | Hotel 24 South, 24 S Market St, Staunton, Virginia, 24401
A rejuvenating fall weekend retreat in the heart of the Shenandoah Valley filled with educational programming and community building. This retreat is open to adults age 21 and up with inherited bleeding disorders and/or to adults whose lives are impacted by a bleeding disorder (i.e. caregivers, spouses, carriers, immediate family members – some restrictions do apply).
Educational programs, scheduled meals, and Saturday night overnight accommodations are provided at no cost for constituents that live in the VHF coverage area.*If you are a constituent that lives outside of the VHF coverage area and you are interested in registering for this meeting, please email heather@vahemophilia.org for more information.
Thank you to our sponsors: BioMatrix, Colburn-Keenan Foundation, Inc., CSL Behring, Genentech, Hoos At Home, National Bleeding Disorders Foundation (NBDF), Octapharma, and Takeda

In-Person Events: Covid-19 Safety Guidance: For all in-person events VHF will follow CDC guidance for COVID-19 safety and prevention. This policy can be found here and will continue to be updated as CDC guidance changes. Please read and contact VHF with any questions or concerns at 804-740-8643 or info@vahemophilia.org.

VIRGINIA BEACH - Education + Connection
2023-10-19 18:30 - 20:00 | Cobalt Grill, 1624 Laskin Rd, , VA 23451, Virginia Beach, VA, 23451, United States
RSVP HERE!
Join us for an educational program for VHF constituents (and their immediate family and/or household members only.) Dinner will be provided and there is no fee to attend.
The topic will be: Bleeding Disorders Conversation
Conversation and Discussion about your bleeding disorder and help with your own personal understanding.
Speaker: Dezarae Morales, RN

Space is sometimes limited and if so, priority will be given to those members that live within the Tidewater region.
Thank you to our sponsor Superior Biologics.

In-Person Events: Covid-19 Safety Guidance: For all in-person events VHF will follow CDC guidance for COVID-19 safety and prevention. This policy can be found here and will continue to be updated as CDC guidance changes. Please read and contact VHF with any questions or concerns at 804-740-8643 or info@vahemophilia.org.

SPONSORS AND SPEAKERS REGISTRATION - Medical Symposium at Great Wolf Lodge
2023-09-30 10:00 - 16:00 | Great Wolf Lodge, 549 E Rochambeau Dr., Williamsburg, VA, 23188
RSVP HERE
We appreciate your interest and support of our 2023 Medical Symposium at Great Wolf Lodge, contact Kelly Waters at kelly@vahemophilia.org or 804-740-8643 for more information about sponsorship.
Closer to the date of the event we will send a detailed email to all registered industry supporters and speakers. This email will include the agenda, booth set up times, what to bring, how many people to expect, etc.
Saturday, September 30th – Medical Symposium (Sample Agenda)
10:00 am – 10:45 am Registration opens, visit exhibits (light refreshments)
10:00 am – 4:00 pm Kids & Teens Program
10:45 am – 11:00 am Welcome
11:00 am – 11:45 am Keynote: TBD
11:45 am – 12:30 pm Lunch
12:30 pm – 1:15 pm Break-out Session 1: TBD
1:15 pm – 1:25 pm Break | Visit Exhibitors
1:25 pm – 2:10 pm Break-out Session 2: TBD
2:10 pm – 2:20 pm Break | Visit Exhibitors
2:20 pm – 2:35 pm Roundtable Session
2:35 pm – 2:50 pm Break | Visit Exhibits (light refreshments)
2:50 pm – 3:35 pm Break-out Session 3: TBD
3:35 pm – 3:45 pm Wrap-up
OVERNIGHT ACCOMODATIONS: We will not make hotel reservations for speakers, Industry Agents OR Industry Agents who are Consumers. However, we do have a vendors room block at Great Wolf Lodge. To ensure availability, please book as soon as possible.
Rate Available: Friday, September 29 and Saturday, September 30, 2023
Group Code: 2023VENDORS
Group Rate: $239.00 plus taxes and fees = $269.68 per night Total (daily resort fee of $39.99 has been waived.)
Suites include: Water Park Passes up to the reserved occupancy of the room
Cut-off Date: Reservations must be made by 11:59pm on Wednesday, August 30, 2023.
Cancellation: All reservations must be guaranteed by the individual and guaranteed with a major credit card. Each individual has up to 72 hours prior to arrival date to cancel the individual room with a $40.00 cancellation fee per room. If the individual cancels the room within 72 hours of arrival date, 100% of the first night’s room rate plus tax will be charged to the individual’s credit card or taken from the deposit.
Phone: Call 1-800.551.9653 and ask for group code 2023VENDORS
or
Online: Visit https://www.greatwolf.com/williamsburg/plan – use booking code 2023VENDORS
Please be advised there are a limited amount of rooms being held for this group and rooms are available on a first come basis. Rooms booked after the group’s allotment has been filled, or after the cutoff date, are subject to availability and the Group Rate may no longer apply. To ensure availability, please book as soon as possible.
» Go here to download instructions on how to make your room reservation.
» Industry Agents who are Consumers and a VHF Constituent: If your family members plan to attend the meeting go here to register them. As a reminder we still ask that you register yourself as an industry representative and make your own hotel reservation.
VHF makes every effort to ensure that the members of the bleeding disorders community are always able to make a clear distinction between its own activities and those of Industry. Further, it is essential that we create beneficial and pressure – free experiences for our community members, and to protect participants in VHF events and programs. Accordingly, VHF has developed a set of standards. Go here to read VHF’s Industry Standards.
Thank you for your continued support!

COMMUNITY MEMBER REGISTRATION - Medical Symposium at Great Wolf Lodge
2023-09-30 10:00 - 16:00 | Great Wolf Lodge, 549 E Rochambeau Dr., Williamsburg, VA, 23188
REGISTRATION IS NOW CLOSED – IF YOU WOULD LIKE TO BE ADDED TO THE WAITLIST PLEASE EMAIL heather@vahemophilia.org
The VHF Medical Symposium will provide consumers with the opportunity to learn more about new and current treatment options, access to care issues and other medical/health related topics. This program will be held at the conference center at the Great Wolf Lodge (GWL) in Williamsburg. Overnight accommodations are available at Great Wolf Lodge and entrance to the water park is included in your stay (all registrants must attend the meeting for access to the water park and overnight accommodations.)
What To Expect: The event will kick off Saturday morning at 10:00 am with light breakfast and time to visit with our generous industry sponsors to learn about the latest treatments and therapies, followed by a keynote presentation, breakout sessions, lunch for all ages, and on-site childcare with A Helping Hand and children and teen programming with Camp Holiday Trails. The meeting will wrap-up by 4:00 pm.
Important Information:
Registration for this event will close on August 23, 2023.
Registrants place/number on the RSVP list will be determined by our Program Registration Guidelines.
This event is open to ALL AGES (not just for families with children under 18.)
There is a $25 registration fee to attend, you will be emailed a link to pay when you receive your confirmation email the last week of August 2023.
To Be Eligible For a Spot You Must Meet ALL of the Following Eligibility Criteria:
Have an inherited bleeding disorder, have a spouse with an inherited bleeding disorder, or be the parent/caregiver of a child with an inherited bleeding disorder. Live in the VHF coverage area (go here to learn more) and/or location of primary bleeding disorder treatment i.e. Hemophilia Treatment Center (HTC), hematologist, etc. is in the VHF coverage area.

Thank you to our current Medical Symposium Sponsors:
Star Level:
BioMarin, CSL Behring, Novo Nordisk, Sanofi, Spark Therapeutics, and Takeda
Premier Level:
Hemabiologics
Corporate Level:
Bayer, BioMatrix, CVS, Drugco Health, Genentech, Medexus, Octapharma, Optum, Pfizer, Soleo Health, and Superior Biologics
Thank you to our Program Sponsor Hemophilia Federation of America (HFA)

In-Person Events: Covid-19 Safety Guidance: For all in-person events VHF will follow CDC guidance for COVID-19 safety and prevention. This policy can be found here and will continue to be updated as CDC guidance changes. Please read and contact VHF with any questions or concerns at 804-740-8643 or info@vahemophilia.org.

RICHMOND - Education + Connection "Gene Therapy Research: Understanding the Science"
2023-09-14 18:30 - 20:00 | Cooper’s Hawk, 11792 W Broad St, Richmond, Virginia, 23233
RSVP HERE
Join us for an educational program for VHF constituents (and their immediate family and/or household members only.) Dinner will be provided and there is no fee to attend.
The topic will be: Gene Therapy Research: Understanding the Science
Description: A patient-friendly program exploring the science behind gene therapy research and how it’s designed to work.
Speaker: Tommy Russomano, Sr. Account Manager, BioMarin, Gene Therapy

Space is sometimes limited and if so, priority will be given to those members that live within the central Virginia region.
Thank you to our sponsor BioMarin.

In-Person Events: Covid-19 Safety Guidance: For all in-person events VHF will follow CDC guidance for COVID-19 safety and prevention. This policy can be found here and will continue to be updated as CDC guidance changes. Please read and contact VHF with any questions or concerns at 804-740-8643 or info@vahemophilia.org.

CUMBERLAND - Community Event at Bear Creek Lake State Park
2023-07-29 10:00 - 12:00 | Bear Creek Lake State Park, 22 Bear Creek Lake Rd, Cumberland, Virginia, 23040
RSVP HERE
VHF community events are social and educational gatherings that occur throughout the year. These events bring together the Virginia inherited bleeding disorders community and are an excellent opportunity for networking, support, increasing knowledge, and for fun for all ages. These programs are designed for VHF constituents (and their immediate family and/or household members only) lunch will be provided and there is no fee to attend.
What to Expect: A picnic style lunch, games, education, networking with new and old friends, and plenty of time to enjoy the park, swimming beach and lake (we have reserved a private shelter and it is 250 feet from the swimming beach, fishing pier and boat rental house and will be available until 7 pm).
Bear Creek Lake State Park is nestled in the heart of the Cumberland State Forest in central Virginia, Bear Creek Lake is less than an hour west of Richmond. It’s the perfect getaway for the outdoor enthusiast. Activities center on the 40-acre lake with a boat launch, fishing pier, boat rentals and a swimming beach. Other attractions include a meeting facility, cabins, camping, picnicking, an archery range and playgrounds. Guests also enjoy the park’s trails and access to the adjoining 16,000-acre Cumberland State Forest, including the 14-mile Cumberland Multi-use Trail, which is available for hiking, biking and horseback riding.
Thank you to our sponsors – Genentech, VCU-HTC, Novo Nordisk, Sanofi, and Takeda

In-Person Events: Covid-19 Safety Guidance: For all in-person events VHF will follow CDC guidance for COVID-19 safety and prevention. This policy can be found here and will continue to be updated as CDC guidance changes. Please read and contact VHF with any questions or concerns at 804-740-8643 or info@vahemophilia.org.
