Virginia Bleeding Disorders Foundation

Ages and Stages: Early Childhood
2022-03-13 16:00 - 17:00 (America/New_York) | Zoom
RSVP HERE

Join VHF, HTC staff and mentor families for a virtual program for new families! This program is designed to support families of infants and young children with hemophilia and other inherited bleeding disorders ages 0-10 with community connection and education. This program is free and open to VHF constituents.
Topic: Ages and Stages: Early Childhood (Ages 0-10)
This virtual session will help parents better understand what they can expect behaviorally and emotionally throughout the early years of childhood. Child development, temperament, common mood and behavior problems and parenting strategies will be discussed. The session will include some bleeding disorder specific information, for example, when a child can start to self-infuse from a behavioral standpoint not a medical standpoint, how (hemophilia) treatments progress with age, and the prevalence of anxiety and other behavioral challenges among children with bleeding disorders.
Presenter: Juliana S. Bloom, Ph.D., Pediatric Neuropsychologist at The Levin Center

Juliana S. Bloom, Ph.D. is a licensed psychologist and pediatric neuropsychologist based in Orlando, Florida. Dr. Bloom currently provides assessment, therapy, and consultation services. Dr. Bloom received her B.A. summa cum laude from Emory University and her Masters of Education and doctoral degrees from the University of Georgia. While at UGA, she conducted clinical research on the neurobiological basis of dyslexia and ADHD. Dr. Bloom completed her internship and postdoctoral fellowship at the Children’s Hospital of Philadelphia, where she worked with children and adolescents with complex medical and neurological illnesses, including stroke, epilepsy, brain tumors, cancer, and traumatic brain injury, among others. Dr. Bloom’s areas of clinical interest include dyslexia, ADHD, neuropsychological outcome and school re-entry following acquired brain injury and medical illness, medical traumatic stress in patients and families, and pediatric stroke. She is the author of seven peer reviewed journal articles, five invited book chapters, and more than 40 conference presentations. She is a member of the American Psychological Association and the International Neuropsychological Society. She loves spending her free time with her husband and two children.

This education program is presented in partnership with Hemophilia Federation of America (HFA).
Thank you to our New Family Education and Support Sponsors Genentech and Takeda.

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.

NHF Bleeding Disorders Conference Travel Grant - Application Due Date
2022-03-21 23:59 (America/New_York) | VA
VHF is pleased to offer travel grants to attend national meetings. National meetings enable our community to come together and exchange information on a wide variety of topics, from the basics of diagnosis to the most relevant developments in treatment and technology. If applying for travel assistance for a national meeting typical award amounts depend on the availability of travel scholarships offered by the national organization. See below to learn more and contact VHF at 804-740-8643 or info@vahemophilia.org if you have any questions.
NHF Bleeding Disorders Conference Scholarship: VHF Terry Lamb Enrichment Scholarship awards can be used to cover travel costs (airfare/mileage/train or bus ticket), hotel accommodations, and meeting registration fees for the NHF Bleeding Disorders Conference. Not to exceed a total of $2,000 per family. You will be responsible for all meals and other incidentals. Application Deadline Extended: 11:59 pm (EST), Monday, March 21, 2022
» APPLY HERE

NHF’s BDC features educational sessions, poster abstract presentations, industry symposia, networking and social events, and exhibits. A lineup of dynamic speakers who provide essential information and insights on the evolving landscape in this exciting new era of treatment for hemophilia, von Willebrand disease, and rare bleeding disorders. To end the conference, the NHF Awards Ceremony recognizes outstanding leaders of the bleeding disorders community whose achievements and contributions have helped transform treatment and care. » Go here to learn more
When: August 25-27, 2022
Where: Houston, TX (For those that cannot join NHF in Houston, they will also be offering a virtual component.)
» RSVP HERE

Community Event and Bleeding Disorders Awareness Month Celebration at Topgolf
2022-03-27 10:30 - 13:00 (America/New_York) | Topgolf Richmond, 2308 Westwood Ave, Richmond, Virginia, 23230
RSVP HERE BY MARCH 11TH

Get active with your bleeding disorders community and celebrate Bleeding Disorders Awareness Month! Join VHF on Sunday, March 27th for education, celebration, community building and opportunities to enhance health and fitness at 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. Gas cards will be available on the day of the event if needed. Don’t let the rising gas prices keep you away!
With special guest Perry Parker!

Since as far back as he can remember, Perry has known two things: he has hemophilia, and he would be a pro golfer. Perry’s parents always encouraged him to pursue his interests. For Perry, this led to a professional golf career, including more than 30 professional tournament wins, playing numerous international tours, and founding and continued involvement with the CSL Behring Gettin’ in the Game℠ Junior National Championship. Perry wants others to know that bleeding disorders do not have to be a game changer, and he has lots of tips to share on how to make dreams come true.

VHF asks that all in-person event attendees be fully vaccinated against COVID-19 in the effort to help stop the spread of COVID-19. Please consider that many of our members face unique health challenges. VHF will not require that any attendees submit proof of vaccination but will rely on the honor system. VHF will continue to follow federal, state, and local health official guidance for all in-person event safety guidelines. As changes to these guidelines are possible, please contact VHF at 804-740-8643 or info@vahemophilia.org if you have questions or concerns or to confirm event details.
» Go here to read full VHF COVID-19 Safety Guidelines for In-Person Events

Thank you to our generous sponsors: Bayer, BioMatrix, CSL Behring, Genentech, Medexus, Novo Nordisk, Octapharma, Optum, Pfizer, Spark Therapeutics, SuperBiologics, and Takeda

Hemophilia Federation of America (HFA) Symposium
2022-04-20 - 2022-04-23 | San Antonio Marriott Rivercenter, 101 Bowie Street, San Antonio, Texas, 78205
This beloved family event has become known as a national “family reunion” for the bleeding disorders community, allowing community members, their families and caregivers to come together for camaraderie and education. HFA is excited to host their first in-person Symposium since 2019. They know everyone is not comfortable traveling just yet so some sessions, such as the keynote presentations, will have an online component. » Go here to learn more
When: April 20-23, 2022
Where: San Antonio, TX (with virtual options)
» RSVP HERE

Education + Connection "Gratitude Nation"
2022-04-28 18:30 - 19:30 (America/New_York) | Steinhilber’s, 653 Thalia Rd, , VA, Virginia Beach, VA, 23452, United States
THIS PROGRAM IS FULL *If you would like to be added to the waitlist please email heather@vahemophilia.org

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: Gratitude Nation
Find out why practicing gratitude may be good for people living with a chronic condition, and learn how to leverage gratitude in your own life.
Speaker: Xaviette Pointer-Kincy, M.Ed., Community Relations & Education Manager | Sanofi Genzyme
Space is limited and priority will be given to those members that live in the Tidewater Region.

Thank you to our sponsor Sanofi Genzyme.

Lyman Fisher Scholarship Application Due Date
2022-04-29 23:59 (America/New_York) | VA
APPLICATION PROCEDURE & DEADLINES
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.

Application Deadline: 11:59 pm (EST), Friday, April 29, 2022
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.

Virtual Education & Support "Mind-Body-Heart Connection"
2022-05-04 19:00 - 20:00 (America/New_York) | Online
RSVP HERE

The mind, body and heart connection plays an integral role in our overall health and well-being and we wanted to honor this connection during “Mental Health Awareness” month, which is celebrated each May. So join VHF for a virtual education presentation in partnership with Hemophilia Federation of America (HFA) with Gary McClain, PhD. This program is free and open to VHF constituents.
Topic: Mind-Body-Heart Connection
This session concentrates on supporting attendees to create a more balanced life and empowers attendees to take control of their health, body, and mind for a healthy lifestyle.
Presenter: Gary McClain, PhD
Dr. McClain is a recognized expert in understanding the emotional reactions to medical diagnosis. He has written for numerous publications and writes a regular column on mental health issues for HIV Plus Magazine. He maintains the website, www.JustGotDiagnosed.com, that is filled with resources for individuals recently diagnosed with chronic and catastrophic medical conditions, their caregivers, and loved ones.
This education program is presented in partnership with Hemophilia Federation of America (HFA).

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.

Women's Day Out
2022-05-14 10:30 - 13:00 (America/New_York) | Saude Creek Vineyards, 16230 Cooks Mill Rd, Lanexa, 23089, United States
RSVP HERE

A rejuvenating day filled with educational programming and community building. This day out is open to VHF constituents who are women age 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).
Join VHF at The Loft at Saude Creek Vineyards where you will learn how to design your own plant terrarium while visiting with fellow members at this fun and crafty workshop, led by Abby Curry of CurryKreates! There is no charge for this event and it will include 3 plants, decorations, and a glass container to build your own terrarium. Additional Plants/Décor can be purchased on site. Refreshments will be provided.

Thank you to our women’s day out sponsors: CSL Behring, Genentech and Takeda

Community Event - Luray Caverns Rope Adventure Park
2022-05-21 11:00 - 13:00 (America/New_York) | Luray Caverns Rope Adventure Park, 970 US-211, Luray, Virginia, 22835, United States
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 family fun, networking, support, and increasing knowledge.
Get active with your bleeding disorders community at the Luray Caverns Rope Adventure Park. This fun physical activity enables participants to grow at an individual or team level, exploring risk, self-discovery, communication, and problem-solving all on different levels of ropes course challenges!
Event is limited to VHF constituents (and their immediate family and/or household members only). There is no fee to attend and lunch will be provided.

Thank you to our generous sponsors: Genentech and Takeda

Annual Meeting - Community Member Registration
2022-06-25 09:00 - 16:00 (America/New_York) | Virginia Crossings Hotel, Tapestry Collection by Hilton, 1000 Virginia Center Pkwy, Glen Allen, VA, 23059, United States
RSVP HERE

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.
» Go here to view the meeting agenda
Annual Meeting Highlights and Sessions Include: Understanding all sides – Keys to effective grassroots advocacy on the state and federal level, Looking from the Outside in: Musculoskeletal Ultrasound, Strategies for Managing Child, Adolescent, and Caregiver Mental Health, Aging as a Person with a Bleeding Disorder and more; Lyman Fisher Scholarship recognition; VHF chapter updates; and on-site children and teen programming with Camp Holiday Trails.
Saturday, June 25th | 10:00 am: Annual Meeting will begin (light refreshments starting at 9:00 am and meeting will conclude by 4:00 pm)

You Do Not Want To Miss our Community Event – Richmond Flying Squirrels Baseball Game on Sunday, June 26th! » Go here to learn more and register *Community event is optional and is not a part of the annual meeting.
Overnight accommodations at Virginia Crossings Hotel & Conference Center are available on Saturday, June 25th. Educational programs, scheduled meals, community events, and overnight accommodations are provided at no cost for constituents that live in the VHF coverage area. There is a $25 registration fee per household (after you register you will receive a link to pay your 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.

Thank you to our sponsors –
Premier Sponsors
Pfizer and Takeda
Platinum Sponsors
Accredo, Bayer, CSL Behring, Genentech, HemaBiologics, Octapharma, Sanofi, and Spark Therapeutics
Corporate Sponsors
BioMarin, BioMatrix, Children’s Hospital of The King’s Daughter’s (CHKD) and the University of Virginia’s (UVA) 340B Factor Program, CVS Specialty Pharmacy, DrugCo Health, NovoNordisk, and Optum
Friends – National Hemophilia Foundation (NHF)

Annual Meeting – Sponsors and Speakers Registration
2022-06-25 09:00 - 16:00 (America/New_York) | Virginia Crossings Hotel, Tapestry Collection by Hilton, 1000 Virginia Center Pkwy, Glen Allen, VA, 23059, United States
RSVP HERE
We appreciate your interest and support of our 2022 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 speakers. This email will include the agenda, booth set up times, what to bring, how many people to expect, etc.
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 Virginia Crossings Hotel & Conference Center and they will extend the group rate of $119 a night for a King size room.
To make your reservation email your room request with the date of arrival and departure to mike.pramshafer@vacrossings.com, and please include/cc this email address heather@vahemophilia.org please let us know if you have any issues or if you do not hear back from the hotel.
For 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 Event - Flying Squirrels Baseball Game
2022-06-26 12:30 - 15:30 (America/New_York) | The Diamond, 3001 N. Arthur Ashe Blvd., Richmond, VA, 23230
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 family fun, networking, support, and increasing knowledge.
Enjoy time catching up with your bleeding disorders community at the Flying Squirrels Baseball Game. We will start when the gates open at 12:30 pm with time for education and lunch in the picnic zone. The game will begin at 1:35 pm and we will have reserved seats as a group in an exclusive area down the third base line and adjacent to the picnic zone.
Picnic Zone Buffet Menu: Hamburgers, Hot Dogs, BBQ Pulled Pork, Grilled Chicken, Mac and Cheese, Coleslaw, and Non-Alcoholic Drinks are included.
Event is limited to VHF constituents (and their immediate family and/or household members only). There is no fee to attend.

Thank you to our generous sponsors: Accredo, Genentech, Superior Biologics, and Takeda

VHF/HACA Family Day Camp at Camp Holiday Trails
2022-07-16 09:00 - 16:00 (America/New_York) | Camp Holiday Trails, 400 Holiday Trails Lane, Charlottesville, VA, 22903
REGISTER HERE

REGISTRATION IS NOW CLOSED – email heather@vahemophilia.org if you would like to be placed on the waiting list.
Join the Virginia Hemophilia Foundation (VHF) & the Hemophilia Association of the Capital Area (HACA) for Family Day Camp, a day of fun camp activities at Camp Holiday Trails (CHT) in Charlottesville, VA.
The event will include arts and crafts; canoeing and kayaking; archery; the challenge course, which features ziplining and rock wall climbing; and traditional camp songs. This program is designed for families with children who are between the ages of 5 – 17, whose children are camp ready and/or are looking to attend camp in the next two years. Eligible families are those impacted by an inherited bleeding disorder who live in the territorial jurisdiction of VHF & HACA (this event is for VHF/HACA constituents and their immediate family and/or household members only.) » Go here to read Family Camp Guidelines
Lodging: Available for attendees on Friday, July 15th and/or Saturday, July 16th at the Sleep Inn and Suites Monticello.
Programming: On Saturday, July 16th Family Day Camp will begin at CHT at 9:00 am and run through 4:00 pm and then that evening in Charlottesville you will not want to miss the Educational Dinner – “Gene Therapy Jeopardy” presented by BioMarin (restaurant TBD.) *Educational dinner is optional and is not a part of the Family Day Camp at CHT. There is no programming on Sunday.
Acceptance to Family Day Camp: Prospective participants must complete the application by Friday, May 13 (this is not a guarantee of participation). VHF and HACA staff will reach out via email to offer you a spot. Once you have been offered a spot you will need to provide your Covid-19 vaccination card and pay your $25 registration fee by Friday, May 20th in order to secure your spot REGISTRATION IS NOW CLOSED
COVID-19 Vaccination Policy: CHT requires that all staff, campers, and volunteers will need to be fully vaccinated for COVID-19 as per the Centers for Disease Control (CDC) with no exemptions. All participants (children and adults) will need to provide proof of vaccination by providing a copy of their vaccination card at least 3 weeks prior to event (Friday, June 24). Also, additional mitigation efforts will be utilized: masks and social distancing when indoors, sanitizing/cleaning on a regular basis along with ventilation and moving activities outside as much as possible to decrease the possibility of exposure to COVID-19. Please note that this policy is based on CDC guidelines and may change. For additional information or questions about the policy contact CHT directly at campisgood@campholidaytrails.org or 434-977-3781.

Thank you to our sponsors: CSL Behring, CVS Health, DrugCo Health, Genentech, Grifols, Hoos at Home, NovoNordisk, Pfizer, Sanofi Genzyme, and Takeda

Community Event - Little Island Park
2022-07-31 10:00 - 12:00 (America/New_York) | Little Island Park, 3820 S Sandpiper Rd, Virginia Beach, VA, 23456
RSVP HERE
Come Celebrate Summer with your bleeding disorders community! Join us for a fun filled educational picnic for individuals with inherited bleeding disorders and their immediate family and/or household members at Little Island Park – a 144-acre beach park in Sandbridge, just north of Back Bay Wildlife Refuge.
We have reserved a covered shelter for the day and highlights include: a picnic style lunch, a playground for the kids, games, education, networking with new and old friends, and plenty of time to enjoy the beach (the beach access leads right up to the reserved shelter).
Little Island Park: The park has a 775-foot beach north of the 400-foot fishing pier for surfing and a 2,000-foot beach for swimming and fishing south of the pier. Back Bay, a brackish lake, provides excellent fishing and crabbing along the western border of this unique park. Park highlights: Picnic Area with Charcoal Grills, Tennis Courts, Basketball Courts, Volleyball Court and Beach Volleyball, Playground, Canoe/Kayak Launch Area on Back Bay, Public Restrooms, Seasonal Rental Items: kayaks, paddleboards and fishing poles, Seasonal Concessions, Vending Machines, and Beach Wheelchairs – Three beach wheelchairs are available on a first come, first served basis. Please visit the park office to check one out with a driver license or photo ID.
Event is limited to VHF constituents (and their immediate family and/or household members only). There is no fee to attend.
Thank you to our sponsors: Bayer, BioMatrix, Genentech and Takeda

» RSVP here by July 15th

Community Picnic - Deep Run Park
2022-08-13 10:00 - 12:00 (America/New_York) | Deep Run Park, 9900 Ridgefield Pkwy, Richmond, VA, 23233
RSVP HERE
Come Celebrate Summer with your bleeding disorders community! Join us for a fun filled educational picnic, community building and try out recreational tree climbing – a one-of-a-kind adventure for you and your family!
Education Session: Adapting Physical Activities for Joint Health
This session discusses the importance of physical activity and introduces ways to adapt activities to participant’s individual physical condition. This session includes exercise demonstrations.
Presenter: Marc Gilgannon, PT
What to expect if you choose to try tree climbing: Experience trees from a whole new perspective! Participants will ascend into the tree canopy using arborist-style rope climbing systems. They will wear helmets, and be harnessed in and on belay by an instructor while climbing. Climbing is always challenge-by-choice: participants can decide to come down at any point. Recommendations on what to wear/bring: gloves – well fitted gardening-style with a rubberized palm (helps grip the rope), closed-toe shoes (high top preferred), long pants or longer shorts, (short-shorts will be uncomfortable with the harness). » Go here to learn more about Riverside Outfitters and Recreational Tree Climbing
Event is limited to VHF constituents (and their immediate family and/or household members only). There is no fee to attend.
Thank you to our sponsors: Accredo, BioMatrix, CSL Behring, Takeda, Genentech, Hemophilia Federation of America (HFA), and Hoos at Home

» RSVP HERE

Education + Connection "Laughing Through Stress"
2022-08-18 18:30 - 19:30 UTC | Montano’s Restaurant, 3733 Franklin Rd SW, Roanoke, VA, 24014, 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 presentation theme will be: Laughing Through Stress
Speaker: Lori K., CSL Behring Common Factors Advocate and Caregiver to 3 sons and 1 granddaughter with hemophilia
Lori K. Bio: When our first child, Jeff, was born, the umbilical cord was wrapped around his neck and his delivery was traumatic for both of us. Then Jeff’s newborn heel prick wouldn’t stop bleeding and his head began to swell. He was whisked out of my arms to a neonatal ICU unit in another hospital. Three days later doctors diagnosed him with severe hemophilia A. My husband and I were shocked—we didn’t even know what hemophilia was! Thankfully, we were immediately introduced to the expertise and support of a hemophilia treatment center and the bleeding disorder community. Refusing to let hemophilia consume us, we stashed it in the back seat and fulfilled our dream of having three children, all of whom just happen to need a little extra help with blood clotting.
Today our three sons are happy, successful adults with lives of their own. Now I enjoy spending time with my grandchildren, including my granddaughter who was also diagnosed with hemophilia A.
Space is limited and priority will be given to those members that live in the South West Virginia Region.

Thank you to our sponsor CSL Behring.

National Hemophilia Foundation (NHF) Bleeding Disorders Conference
2022-08-25 - 2022-08-27 | Houston, TX
Meeting: National Hemophilia Foundation (NHF) Bleeding Disorders Conference
NHF’s BDC features educational sessions, poster abstract presentations, industry symposia, networking and social events, and exhibits. A lineup of dynamic speakers who provide essential information and insights on the evolving landscape in this exciting new era of treatment for hemophilia, von Willebrand disease, and rare bleeding disorders. To end the conference, the NHF Awards Ceremony recognizes outstanding leaders of the bleeding disorders community whose achievements and contributions have helped transform treatment and care. » Go here to learn more
When: August 25-27, 2022
Where: Houston, TX (For those that cannot join NHF in Houston, they will also be offering a virtual component.)
» RSVP HERE

Virtual - Education + Connection “Trauma and PTSD in the Bleeding Disorders Community”
2022-09-15 18:00 - 19:00 UTC | Virtual
RSVP HERE
Participants will enjoy meaningful education and time to gather and share with other people who encounter similar challenges. This virtual session is free and open to VHF constituents.
Topic: Trauma and PTSD in the Bleeding Disorders Community
The session will introduce the signs and symptoms of Post-Traumatic Stress Disorder (PTSD) and discuss how to assess PTSD in the bleeding disorder community and in chronic health conditions generally. Clinical manifestations in acute and chronic stress will be reviewed. The session includes a discussion of evidence based treatments for PTSD and trauma and when to connect patients to more intensive mental health care. Resources for PTSD and Trauma are shared.
Presenter: Dr. Eric Russ, Clinical Psychologist

Dr. Russ is a licensed clinical psychologist in Louisville, KY with leadership experience in academic, healthcare, and corporate settings. His clinical expertise is focused on helping people recover from the effects of trauma. In addition to his clinical work, Dr. Russ also serves as the Executive Director of the Kentucky Psychological Association. He has a passion for helping organizations create psychologically healthy environments with a resilient and engaged workforce. Dr. Russ received his Ph.D. in Clinical Psychology from Emory University and completed his internship at the San Francisco VA and fellowship in trauma psychology at Rush University Medical Center in Chicago. After training, Dr. Russ moved back to Louisville where he works clinically and works to improve the psychological wellbeing ok Kentucky.

» RSVP HERE Once you RSVP you will receive the zoom link separately via email from heather@vahemophilia.org.

This education program is presented in partnership with Hemophilia Federation of America (HFA).
Thank you to our Sponsors: BioMarin, CSL Behring, Genentech, and Takeda

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.

Education + Connection “Expect the Unexpected: Prepare for Anything”
2022-09-21 18:30 - 19:30 UTC | Cutlass Grille, 725 Eden Way N, Ste 700, Chesapeake, VA, 23320
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: 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: Jan Martin MSN, RN-BC, CPN, Community Education Specialist | Takeda
Space is limited and priority will be given to those members that live in the Tidewater Region.

Thank you to our sponsor Takeda.

Medical Symposium at Great Wolf Lodge
2022-10-15 10:00 - 16:00 UTC | Great Wolf Lodge, 549 E Rochambeau Dr., Williamsburg, VA, 23188
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 Great Wolf Lodge (GWL) in Williamsburg – an indoor water park and resort designed to bring together the Virginia inherited bleeding disorders community for education, networking, and support. This weekend is open to individuals with an inherited bleeding disorder and their immediate family and/or household members. Overnight accommodations are available at Great Wolf Lodge and entrance to the water park is included in your stay.
Highlights Include:
Medical Symposium, kids and teens program and lunch for all ages on Saturday (all registrants must attend the meeting for access to the water park and overnight accommodations.)
Access to GWL water park Saturday and Sunday.
*OPTIONAL* Unite For Bleeding Disorders Breakfast & Celebration on Sunday at GWL – must register separately for this event » Go here to learn more
Important Information:
Registration for this event will close on August 15, 2022.
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 asked to pay once you receive a spot at the event (this fee will be waived for those constituents that have registered and donated to Unite For Bleeding Disorders.)
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 Program Sponsors –
Colburn-Keenan Foundation – Program Support
Hemophilia Federation of America (HFA) – Educational Programming
National Hemophilia Foundation (NHF) – Community Voices in Research
Thank you to our Medical Symposium Sponsors –
Star Level: BioMarin, CSL Behring, Novo Nordisk, Sanofi, Spark Therapeutics and Takeda
Premier Level: Hema Biologics and Hoos at Home
Corporate Level: Bayer, BioMatrix, CSI Pharmacy, CVS Specialty Pharmacy, Drugco Health, Genentech, Medexus, Octapharma, Optum, Paragon Healthcare, Pfizer and SoleoHealth

Medical Symposium - Sponsors and Speakers Registration
2022-10-15 10:00 - 16:00 UTC | Great Wolf Lodge, 549 E Rochambeau Dr., Williamsburg, VA, 23188
REGISTER HERE

We appreciate your interest and support of our 2022 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, October 15th – 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 room block at Great Wolf Lodge where they have extended our group rate of $239.00 plus taxes and fees = $269.68 per night (Family Suite) and the Resort Fee of $39.99 per room has been WAIVED for this group. The hotel has shared with us that you may find a lower base rate online but that does not include the $39.99 daily resort fee that you would see upon check out. (Saturday night only rates are higher, adding Friday lowers the rate) the rate they are providing is valid through September 24.
» All Industry Agents – go here to see 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!

Unite For Bleeding Disorders at Great Wolf Lodge
2022-10-16 08:00 - 10:30 UTC | Great Wolf Lodge, 549 E Rochambeau Dr., Williamsburg, VA, 23188
JOIN YOUR VIRGINIA BLEEDING DISORDERS COMMUNITY AND UNITE FOR BLEEDING DISORDERS!

REGISTER TODAY to help us raise $35,000! Every dollar raised for Unite For Bleeding Disorders stays 100% local to VHF and goes toward supporting our many educational events, advocacy efforts, and community programs.
NEW THIS YEAR – “Walk Your Way” After registering yourself and/or your team you can then decide when and where you want to walk! Choose your neighborhood, favorite park, the beach, the options are endless! Send VHF photos of your walk and then, plan to gather yourself and your friends and family to celebrate with us on Sunday, October 16th at Great Wolf Lodge in Williamsburg, VA – if you are unable to coordinate a walk for your team or join us for the celebration you can still register as a virtual walker and fundraise or donate!
Event Schedule:
8:00 am – 9:00 am Registration, Breakfast Buffet, Entertainment & Activities, Visit with Sponsors
9:00 am – 10:00 am Entertainment & Activities, Visit with Sponsors
10:00 am – 10:30 am Unite Walk Program, Pinwheel Ceremony, and Prize Announcements
Registered individuals who make a $25 minimum donation will receive a 2022 Unite for Bleeding Disorders T-shirt AND be on the look-out for fundraising incentives and exciting prizes leading up to the walk! » Go here to register your team or donate to the walk!
YOUR FUNDRAISING MAKES AN IMPACT – CONSIDER THESE AMOUNTS WHEN SETTING YOUR INDIVIDUAL OR TEAM FUNDRAISING GOALS
When you register and fundraise for VHF you help us to educate, advocate, build community, and empower those impacted by an inherited bleeding disorder so join us in helping make a real impact so that our community members can lead long, productive, and healthy lives. For more information contact Kelly Waters at 804-740-8643 or info@vahemophilia.org.
$2,000 funds a Lyman Fisher Scholarship, allowing a student with a bleeding disorder or from a family impacted by a bleeding disorder to pursue higher education.
$1,000 supports a Travel Scholarship, enabling a patient or family member to attend a national education and/or a federal advocacy meeting.
$500 helps to send a child or teen to Camp Youngblood where they gain an increased sense of independence in managing their bleeding disorder.
$250 provides a patient and/or their family emergency financial assistance.
$100 supports a patient and/or their family’s attendance to VHF’s Annual Education Meeting and/or state Advocacy Training.
$50 pays for a lifesaving Medic Alert Tag.
$25 pays for direct patient support (in partnership with HTCs) by providing resources such as new family welcome kits and ensuring gas cards are available for transportation to medical appointments.
» Go here to register your team or donate to the walk!

Thank you to our generous sponsors!
LOCAL SPONSORS
Gold Level: CSL Behring, Genentech and Octapharma
Silver Level: BioMatrix and Medexus
Bronze Level: DrugCo Health
NATIONAL SPONSORS
Presenting Partners: Hemophilia Alliance and Takeda
National Community Partners: Biomarin and Sanofi
National Partners: Ascella Health, Bayer, and Hema Biologics

Check out some awesome photos from past VHF Unite Walks!

→ 2018
→ 2019
→ 2020
→ 2021

Virtual - Advocacy Education “Testifying and Serving on Boards and Commissions”
2022-10-20 12:00 - 13:00 UTC | Zoom
RSVP HERE
Join constituents, advocacy committee members, and community stakeholders from throughout Virginia for a virtual advocacy education meeting that covers topics relevant to the bleeding disorders community!
Topic –
“Testifying and Serving on Boards and Commissions”
Join us to learn about developing and providing testimony in legislative and regulatory meetings, as well as applying and serving on local and state-based boards and commissions.
Speakers –
Brenda Bordelon, Executive Director, Hemophilia Association of the Capital Area (HACA)
Becky Bowers-Lanier, VHF/HACA Advocacy Consultant

» RSVP HERE
You will receive the zoom link separately via email from heather@vahemophilia.org.

Thank you to our sponsors: National Hemophilia Foundation (NHF), PhRMA and Takeda

Virtual - Women’s Education + Connection "A Pathway for Best Care: The Reproductive Years"
2022-11-03 18:00 - 19:00 UTC | Zoom
RSVP HERE

Participants will enjoy meaningful education and time to gather and share with other people who encounter similar challenges. This virtual session is free and open to women age 18 and up with inherited bleeding disorders and/or to women whose lives are impacted by a bleeding disorder (i.e. caregivers, spouses, immediate family members).
Topic: A Pathway for Best Care: The Reproductive Years
In this session, attendees will learn about how to identify the symptoms of a bleeding disorder and how to effectively manage the onset of menorrhagia, family planning and childbirth.
Presenter: Dr. Sarah O’Brien, Pediatric Hematologist at Nationwide Children’s Hospital
Dr. Sarah O’Brien is a pediatric hematologist at Nationwide Children’s Hospital and an Associate Professor of Pediatrics at The Ohio State University College of Medicine. She serves as the Director of Experimental Therapeutics for the Division of Pediatric Hematology/Oncology/BMT and also leads a multi-disciplinary young women’s hematology clinic at Nationwide Children’s Hospital. Her clinical and research interests include the evaluation and diagnosis of mild bleeding disorders, pediatric thrombosis and thromboprophylaxis, and the intersections between hematology and women’s health.

» RSVP HERE
Once you RSVP you will receive the zoom link separately via email from heather@vahemophilia.org.

This education program is presented in partnership with Hemophilia Federation of America (HFA).

VIRTUAL - VHF/HACA Advocacy Stakeholder and Education Meeting
2022-11-09 16:00 - 18:00 UTC | Zoom
RSVP HERE
Join constituents, advocacy committee members, and community stakeholders from throughout Virginia for an education meeting that will cover a wide range of advocacy topics relevant to the bleeding disorders community!
MEETING AGENDA
State Update AND What Can We Expect in 2023 General Assembly Becky Bowers-Lanier, VHF/HACA Advocacy Consultant and Heidi Dix, Senior Vice President of Policy, Virginia Association of Health Plans
Virginia Bleeding Disorder Program (VBDP) Update Lauren Dunn, Health Insurance Consultant, VA Bleeding Disorders Program
Federal Update Miriam Goldstein, J.D, Director of Policy at Hemophilia Federation of America (HFA), Nathan Schaefer, MSW, VP of Public Policy at National Hemophilia Foundation (NHF), and Matt Delaney, Government Relations Specialist at National Hemophilia Foundation (NHF)
» RSVP HERE Once you RSVP you will receive the zoom link separately via email from heather@vahemophilia.org.

Thank you to our sponsors: Genentech, National Hemophilia Foundation (NHF), Pfizer, PhrMA, Takeda and We Work For Health

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.

RICHMOND - Winter Gathering at Dave & Buster's
2022-12-10 11:00 - 13:00 UTC | Dave & Busters Richmond, 4001 Brownstone Blvd., Glen Allen, VA, 23060, United States
RSVP HERE FOR RICHMOND ONLY
Come celebrate the winter season with your bleeding disorders community at Dave & Buster’s in RICHMOND. 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.
As a reminder there will be no visits from Santa or gifts this year but we will supply $15 power play cards to use at Dave & Busters.
» RSVP HERE BY NOVEMBER 28TH FOR RICHMOND WINTER GATHERING

Thank you to our sponsors: Bayer, CSI Pharmacy, CSL Behring, DrugCo Health, Hemophilia Federation of America (HFA), Superior Biologics and Takeda
Thank you to our Family Fun and Connections Sponsor Colburn-Keenan Foundation for providing the power play cards!

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 - Camp Youngblood Information Session
2023-01-12 20:00 - 21:00 (America/New_York) | Zoom
RSVP HERE
Are you thinking about sending your child to Camp Youngblood at Camp Holiday Trails (CHT) for the first time in 2023, or would you just like a refresher on the camp experience? Join the Hemophilia Association of the Capital Area (HACA) and VHF for a virtual information session via Zoom on Thursday, January 12, at 8 p.m. to learn more about camp – even if you aren’t quite ready to send your kids this year.
What to expect: CHT Director of Programs Caitlin Carroll will talk more about camp activities and facilities; longtime Camp Youngblood parent and nurse Amy Walker (VHF) will address the medical accommodations and her experiences as a camp parent; and parents Bethany and Todd Swain (HACA) will share their personal experiences with sending their son to camp. This virtual session will be a great opportunity to learn and ask questions.
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 Camp Youngblood

VIRTUAL - Virginia General Assembly Weekly Check In
2023-01-17 - 2023-02-21 | Zoom
RSVP HERE

Join VHF & Hemophilia Association of the Capital Area (HACA) for a quick weekly 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.
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 17, 2023 4:30 PM
Tues., Jan 31, 2023 4:30 PM
Tues., Feb 7, 2023 4:30 PM
Tues., Feb 14, 2023 4:30 PM
Tues., Feb 21, 2023 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.

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.

VIRGINIA BEACH - Educational Dinner at Dave & Buster's
2023-01-19 18:30 - 20:30 UTC | Dave & Busters at Lynnhaven Mall, 701 Lynnhaven Parkway, Suite G19, Virginia Beach, VA, 23452, United States
RSVP HERE
Join your bleeding disorder community for an educational dinner program for VHF constituents (and their immediate family and/or household members only).
What to Expect: During this education session Doctor Michael Zolotnisky, PT, DPT, will discuss topics important to the bleeding disorders community such as maintaining joint health, KT taping, physical fitness, wellness and several other fitness related topics. After the education session there will be plenty of time for discussion, catching up, and enjoying games with your family and friends! Dinner and power cards to Dave & Buster’s will be provided and there is no fee to attend.

Michael Zolotnisky, PT, DPT, is a physical therapist and the Clinical Director at NJ Spine and Wellness in Morganville, New Jersey. He is currently leading the neurological department to treat various conditions including, but not limited to concussions, multiple sclerosis, stroke, and Parkinson’s disease. Dr. Zolotnisky was born in Italy, grew up in Brooklyn, New York, and currently resides in Morganville, New Jersey. He received his Doctorate of Physical Therapy from Chatham University in Pittsburgh, Pennsylvania, in December of 2014. Dr. Zolotnisky is attaining his vestibular certification to further improve complaints of dizziness, headaches, and all balance dysfunction. He prides himself on performing high-level balance activities to include walking with eyes closed and on uneven surfaces, and he loves to incorporate boxing to further challenge his patients. In addition to neurological treatment, Dr. Zolotnisky utilizes the Mulligan Concept to perform pain-free physical therapy that immediately improves function. He offers a personalized aquatic therapy program for indoor and outdoor pool settings. Dr. Zolotnisky has completed three half marathons in one year and offers running tips as well as gym strategies. In addition, he is a national speaker for the Hemophilia community, speaking to various groups in the bleeding disorder family.

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

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 - VHF & HACA Advocacy Education Meeting
2023-01-24 19:00 - 20:00 (America/New_York) | Zoom
RSVP HERE

Join VHF & Hemophilia Association of the Capital Area (HACA) for a virtual advocacy education program that will focus on the 2023 Virginia General Assembly. Join in and hear details from advocacy consultant, Becky Bowers-Lanier, about proposed legislation of interest to the bleeding disorders community, its partners and other stakeholders.
You will also learn more about the VHF/HACA legislative updates that will occur weekly via zoom during the 2023 General Assembly session and how you might be able to get more involved »Go here to learn more.
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.

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.
