Virginia Bleeding Disorders Foundation

HACA/VHF General Assembly Weekly Check-In
2021-02-23 16:30 - 17:00 (America/New_York) | Zoom
» Go here to register
Join HACA and VHF for a quick weekly General Assembly check-in. We will gather on Zoom to get an overview of the past weeks 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.
2021 General Assembly Session Dates: January 13th – February 11th – 2021
When you register you will receive an email with a re-occurring zoom link that you can use for all of the weekly check-ins.
Tuesdays at 4:30 pm (EST):

January 26
February 2
February 9
February 16
February 23

This session is free and open to VHF constituents, any constituent under the age of 12 will need adult supervision to participate.
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.

Virtual Community Connection - Board and Brush Activity
2021-02-25 19:00 - 20:00 | Zoom
RSVP IS CLOSED – THIS EVENT IS NOW FULL
Join VHF for a highly interactive and engaging evening of education, community connection, and a family-friendly craft activity. Crafting is a great way to help pass the time and cope with stress so bring your creativity and a willingness to learn and you will build a wooden décor piece you’ll be proud to display in your home!
Broad & Brush Craft Activity: If you are unfamiliar with Board & Brush craft activities go here to learn more. We will be doing a modified version and everything you need will be supplied and mailed to your home (supplies will come from 3rd party vendor East/West). To give you more of an idea of the activity – here’s is a video created by Jessica Graham, CSL Behring Community Support Liaison, who will be leading us through the craft.

3 participants max per household and each participant will need to be registered by February 11th
This session is free and open to VHF constituents ages 10 and up, any constituent under the age of 12 will need adult supervision to participate.

Turning Stumbling Blocks Into Stepping Stones Education Presentation: We are also thrilled to have, Perry Parker, CSL Behring Gettin’ in the Game Athlete, join us to present Turning Stumbling Blocks Into Stepping Stones. Growing up with hemophilia A, Perry was told many times by his doctors and nurses that he couldn’t do certain things, particularly when it came to sports. With his parents’ support and encouragement, Perry pushed himself to explore what he could do, which led to a lifelong love of golf. Perry’s brother also has hemophilia, and their parents wanted them both to be free to make their own choices.
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.
Thank you to our community connection sponsor CSL Behring!

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.

New Family Education and Support
2021-03-03 19:00 - 20:00 | 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 with community connection and education.
This program is for families with children who have been diagnosed with an inherited bleeding disorder in the last 7 years.
Thank you to our program sponsors Accredo, Genentech, Hemophilia Federation of America, 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.

Virtual Community Connection - All Out Break-Out Games!
2021-03-14 16:00 - 17:30 | Zoom
» RSVP Here
Join VHF for a highly interactive and engaging afternoon playing games, connecting with community, and celebrating Bleeding Disorders Awareness Month! Participants will gather in a Zoom room for a fun introduction to the program, and then we will divide into groups in breakout rooms to play a series of minute-to-win it style games and then will return to the main room to report achievements. Fun for all ages!
All registrants that attend will be entered into a drawing to win one of our numerous gift cards. We plan on having several winners (one per household)!
This session is free and open to VHF constituents, any constituent under the age of 12 will need adult supervision to participate.

This program will be facilitated by Beyond Recreation who has built a solid reputation among the members of the national bleeding disorder community, most notably in the areas of youth programming and summer camp. Anne Henningfeld and Michael Jay Garner of Beyond Recreation bring a distinctive list of credentials to the world of bleeding disorder programming.
Anne is a Certified Therapeutic Recreation Specialist (CTRS), holding an MA in Recreation Therapy from the University of Toledo. As the co-founder of Beyond Recreation, Anne has been developing custom programming for seven years. Prior to that, Anne was the Education and Youth Programs Coordinator at the Hemophilia Foundation of Michigan. Anne has also been a presenter at the National Hemophilia Foundation Annual Meeting, the Hemophilia Federation of America Symposium, and is a two-time winner of the National Hemophilia Foundation’s Health Education Award of Distinction.
Michael Jay Garner holds a BA in Psychology from Emory University, where he also learned comedy, improvisation and juggling. Michael has over 20 years’ experience in workshop facilitation and working with medically specialized children and young adults in both camp and hospital settings. His unique and engaging style of presentation enhances every program with a combination of entertainment and education. Michael is also an artist with Cirque du Soleil, having spent the past four years touring the world with the big top show, KOOZA.
Thank you to our community connection sponsors CSL Behring, Genentech, Hemophilia Federation of America, Pfizer, 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.

CAMERA ON! Healing and the Art of Photography
2021-03-25 19:00 - 20:30 | Zoom
» RSVP HERE
CAMERA ON! Healing and the Art of Photography
If you enjoy taking pictures, this program is for you! Please join VHF and BioMatrix for this highly interactive photography program. In addition to engaging with recent research regarding the impact of art and photography on one’s health, participants will apply their photo skills in several picture-taking activities, guided by retired career photographer and member of the bleeding disorders’ community, Rich Vogel. Lights, Action, Camera On!
Participants will need to bring something to take pictures with (a camera, a phone with camera), and will need to have a portable object that means something to them: a book, a figurine, a great-grandfather’s pocket watch, etc.
This session is free and open to VHF constituents ages 10 and up, any constituent under the age of 12 will need adult supervision to participate. All registrants that attend will be entered into a drawing to win one of our numerous gift cards. We plan on having several winners (one per household)!
Thank you to our program sponsor BioMatrix.

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.

VHF/HACA Men's Rap Session
2021-04-08 19:00 - 20:00 | Zoom
» RSVP Here
In partnership with the Hemophilia Association of the Capital Area (HACA), we are offering a virtual Men’s Rap Session on a quarterly basis! We are offering these volunteer led sessions in the hopes that during these times of increased isolation we can help to create a network of men who educate and support each other which can lead to better health and stress management.
These rap sessions are free and open to men who are constituents of VHF/HACA, age 21 and up, and are diagnosed with an inherited bleeding disorder.
Thank you to our sponsor Hemophilia Federation of America (HFA).
Read this article for more information on how to join a virtual meeting on the zoom platform using a desktop computer, mobile device/tablet, from a landline or a mobile phone. If you need assistance or have any barriers that are keeping you from participating in virtual programs please call 804-740-8643 or email info@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.

Medical Symposium
2021-04-17 15:00 - 17:30 | Zoom
»RSVP HERE
The VHF Medical Symposium will provide consumers with the knowledge needed to discuss emerging and current treatment options and have conversations around access to care and insurance trends, as well as recognize World Hemophilia Day.
» Please go here to view our Virtual Medical Symposium Program. This program is one way our generous sponsors can virtually connect with the community by providing links to their electronic resources, brochures, websites, social media sites and more!
When you RSVP for this program you will receive one zoom link for all sessions, you are welcome to join us for one or for all – see below for more details.
VHF constituents will receive a gas and/or grocery gift card. Value will be connected to the number of sessions you attend with a maximum value of $50. 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.
We could not provide this important event without the help of our generous sponsors.
Presenter Sponsors: Bayer, BioMarin, Genentech, Sanofi Genzyme, Spark Therapeutics, and Takeda
Corporate Sponsors: CSL Behring, DrugCo Health, Pfizer, and Novo Nordisk

Medical Symposium: Saturday, April 17th from 3:00 – 5:30 pm
Topic: Insurance Coverage: Opportunities Today and Challenges for Tomorrow
Presenters: Kollet Koulianos, MBA, Senior Director Payer Relations at National Hemophilia Foundation and Miriam Goldstein, Director of Policy at Hemophilia Federation of America
Health coverage is essential for people with bleeding disorders. This session will look at health insurance developments in the present and on the horizon. We will talk about the American Rescue Plan, signed into law just last month, which provides new opportunities for people to get health insurance, upgrade coverage, and/or lower their costs for coverage. We will hear an update on accumulator adjusters: how these strategies impact patients, and what is next on the advocacy front. And we will look into the future, forecasting how insurers are likely to respond to the advent of gene and novel therapies.
Topic: World Hemophilia Day Spotlight
Presenter: Roddy Doucet, Philanthropy Manager, Community Outreach at World Federation of Hemophilia
Topic: Update on National Hemophilia Foundation’s (NHF’s) Plans and Future Directions for the Bleeding Disorders Community
Presenter: Leonard Valentino, MD, President and Chief Executive Officer at NHF
Join VHF as we host a presentation by the CEO of the NHF, Dr. Leonard Valentino. We are thrilled to have Dr. Valentino come to speak to our community to share his thoughts on NHF’s mission and vision, how COVID will impact the bleeding disorders community in the future, COVID vaccines, VWD Guidelines and advocacy, a NHF Bleeding Disorders Conference teaser and highlights of the national research blueprint. There will be time for questions and discussion – you will not want to miss this opportunity to engage with a national leader of the bleeding disorders community!

Presenter Sponsors Education Sessions: April 15th – April 30th
Date: Thursday, April 15th at 7:00 pm
Sponsor: Genentech
Presenters: Maya Bloomberg, ARNP, MSN University of Miami Hemophilia Treatment Center and Louis, a HEMLIBRA Ambassador
Topic: Give it a Shot: A Different Type of Hemophilia A Therapy
Description: Join us for an educational session on HEMLIBRA
Date: Friday, April 16th at Noon
Sponsor: Bayer
Presenter: Maya Bloomberg, ARNP, MSN University of Miami Hemophilia Treatment Center
Topic: Meet Jivi
Description: This Jivi Patient Program will review: What is Jivi? What is the safety and bleed protection information for Jivi? What additional resources can I expect from Bayer?
Date: Thursday, April 22nd at 7:00 pm
Sponsor: Takeda
Presenter: Betsy Koval BSN RN, Senior Clinical Specialist with Takeda
Topic: VWiD
Description: Come experience a story from a real VONVENDI patient about their journey of being diagnosed and living with von Willebrand disease (VWD). Our goal is to continue to educate the VWD community with impactful, relevant VWD programs. The VWiD program provides the opportunity for members to hear stories, receive information, and connect with other members of the community.
Date: Friday, April 23rd at Noon
Sponsor: Sanofi Genzyme
Presenters: CoRe Manager, Xaviette Pointer-Kincy and Physical Therapist, Jeff Kallberg
Topic: You Count On Your Joints More Than You Think
Description: You’re someone who uses their joints every day. Join us for an interactive educational experience to learn how you can count on ELOCTATE to protect you and your joints from bleeds. You’ll find out more about how we use our joints for everyday activities, the latest data about ELOCTATE and how it works, and how you can count on us for an array of support resources.
Date: Thursday, April 29th at 7:00 pm
Sponsor: BioMarin
Presenter: Dr. Guy Young, HTC Director, Children’s Hospital Los Angeles
Topic: Drug Discovery & Beyond
Description: How scientists and the FDA research and evaluate new treatment options for you.
Date: Friday, April 30th at Noon
Sponsor: Spark Therapeutics
Presenter: Laureen Temple, Patient Education Lead, Spark Therapeutics
Topic: Understanding Gene Therapy Research and Its Potential Application to Hemophilia
Description: This presentation is intended to walk you through the journey that started over 50 years ago with the beginnings of gene therapy research. We will walk through the basics of genetics and how that plays a role in hemophilia. With that knowledge, we will look at how gene therapy is meant to work, and discuss both the potential for and the challenges of investigational gene therapy research today.

This session is free and open to VHF constituents, any constituent under the age of 12 will need adult supervision to participate. 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 virtual meeting etiquette and rules of engagement.

Virtual Women's Retreat
2021-05-16 16:00 - 17:30 | Zoom
» RSVP HERE
A rejuvenating afternoon retreat filled with educational programming, crafts, and community building. This retreat is open to women age 21 and up with an inherited bleeding disorder/carriers and/or to women whose lives are impacted by a bleeding disorder (i.e. caregivers, spouses, immediate family members).
Education Session: Janet Chupka BSN, RN, Research Director at the Hemophilia Federation of America (HFA) will open up our session with an update on the FIRST Project (patient-centered research geared specifically toward women within the bleeding disorder community) and related activities and other bleeding disorder/female focused initiatives/programs that might be of interest.
Craft Project: Michelle Stielper with BioMatrix will lead a relaxing and easy DIY Beaded Suncatcher craft project! All supplies will be shipped directly to your home, must RSVP by Monday, May 3rd in order to be eligible to receive supplies.
Thank you to our retreat sponsors: BioMatrix, CSL Behring, Genentech, and Takeda

Read this article for more information on how to join a virtual meeting on the zoom platform using a desktop computer, mobile device/tablet, from a landline or a mobile phone. If you need assistance or have any barriers that are keeping you from participating in virtual programs please call 804-740-8643 or email info@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.

Advocacy Chat with Delegate Kathleen Murphy
2021-05-27 19:00 - 20:00 | Zoom
» RSVP HERE
Join us as we chat with Delegate Kathleen Murphy (34th District, Virginia House of Delegates) to learn more about the passage of HB 1995 that created the Rare Disease Advisory Council and its proposed scope of work. Hear more about Del. Murphy’s interest and advocacy for creating the Council AND for her general impressions on the virtual nature of the General Assembly meetings.
Thank you to our advocacy chat sponsors National Hemophilia Foundation (NHF) and Takeda
Read this article for more information on how to join a virtual meeting on the zoom platform using a desktop computer, mobile device/tablet, from a landline or a mobile phone. If you need assistance or have any barriers that are keeping you from participating in virtual programs please call 804-740-8643 or email info@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.

VHF Annual Meeting
2021-06-26 17:00 - 18:30 | Zoom
» RSVP HERE
VHF’s Annual Meeting brings together the inherited bleeding disorder community to share information on a wide variety of topics. It is a great opportunity for education, networking, and support for individuals and families. The annual meeting will be held virtually on zoom and will have time for VHF chapter updates with a focus on the work of our board of directors and an exciting keynote presentation from Save One Life founder and board president Laurie Kelley and executive director Chris Bombardier.
*VHF constituents that register and attend will receive dinner on us (details TBD)* This session is free and open to VHF constituents, any constituent under the age of 12 will need adult supervision to participate.
» Please go here to view our Virtual Annual Meeting Program This program is one way our generous sponsors can virtually connect with the community by providing links to their electronic resources, brochures, websites, social media sites and more!
We could not provide this important event without the help of our generous sponsors.
Premier Sponsors: Pfizer and Takeda
Platinum Sponsors: Accredo, Bayer, and Genentech
Corporate Sponsors: BioMarin, CSL Behring, DrugCo, HEMA Biologics, Children’s Hospital of The King’s Daughter’s and the University of Virginia’s 340B Factor Program, Novo Nordisk, Octapharma, Sanofi Genzyme, and Superior Biologics

Keynote Presentation: “The right time helping, changes a life.” Helping People with Bleeding Disorders in Developing Countries
Description: Join Save One Life founder and board president Laurie Kelley and executive director Chris Bombardier for an interactive presentation that will offer a global perspective on the bleeding disorder community and the work of Save One Life. Learn the challenges that many face and how they overcome them with our help!

Laureen A. Kelley is president of LA Kelley Communications, Inc. and is the author of ten books on bleeding disorders, including Raising a Child With Hemophilia and Success as a Hemophilia Leader. Laurie was founder and publisher of the Parent Empowerment Newsletter (PEN) for 31 years, and PEN’s Insurance Pulse for 11 years. She also founded Project SHARE, a humanitarian program that donates millions of dollars’ worth of blood-clotting medicine annually to impoverished patients in developing countries. Laurie is founder and president of Save One Life, a nonprofit child sponsorship agency for children with bleeding disorders in developing countries. She has an adult son with hemophilia.

Chris Bombardier is executive director of Save One Life, an international nonprofit that provides direct financial aid to patients with hemophilia in developing countries. Chris was a board member of Save One Life from 2012 to 2019. During that time, Chris was actively involved on the program and scholarship committees. A mountaineer, Chris became the first person with hemophilia to successfully climb the Seven Summits and dedicated his climbs to raising funds for Save One Life. He eventually raised over $100,000 and helped 75 children receive sponsorships. Chris began his career as a professional research assistant with the University of Colorado Hemophilia and Thrombosis Center after graduating from Doane College with a bachelor’s degree in biology. He later worked with GutMonkey, an experienced-based education company that works with people with chronic medical conditions. Through his travels around the world for the Seven Summits, and his work with Save One Life, Chris discovered his passion for global health work and returned to school. He recently earned his master’s in global health from Northwestern University in 2020.

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.

Community Event and Unite Walk Kick-Off
2021-06-27 16:00 - 17:00 | Zoom
»RSVP HERE
Join VHF for a highly interactive and engaging afternoon!
If you have been to one of our Unite for Bleeding Disorders Walk events then you may be familiar with the amazing Jonathan Austin – Juggler, Magician and Entertainer! Come one, come all and be dazzled by Jonathan’s spirit-lifting performance and then be prepared to learn one or two magic tricks that you too can show-off to friends and family! We will also spend some time learning more about this years Unite for Bleeding Disorders Walk – don’t miss out on this opportunity to give back to your bleeding disorders community!
All registrants that attend will be entered into a drawing to win one of our numerous gift cards. We plan on having several winners (one per household)! Also anyone that is registered for the walk at www.uniteforbleedingdisorders.org/event/rva before the kickoff will be entered to win an additional prize!
This session is free and open to VHF constituents and anyone interested in learning more about the Unite for Bleeding Disorders Walk, any participant under the age of 12 will need adult supervision to participate.
Thank you to our community connection sponsors Accredo, Hemophilia Federation of America 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.

VHF & HACA Pop-Up Day Program for Families
2021-07-31 10:00 - 14:00 | Lake Fairfax Park, 1400 Lake Fairfax Drive, Reston, VA, 20190
» RSVP HERE
Pop-up day program is for families affected by inherited bleeding disorders who live in either Virginia Hemophilia Foundation (VHF) and/or Hemophilia Association of the Capital (HACA) territories – go here to learn more.
WE’RE TAKING CAMP ON THE ROAD!
This Summer we are working with Camp Holiday Trails to bring an in-person family camp day program to a park near you!
What you can expect:

A safe in-person event that will include protocols such as mask-wearing, social distancing, and using a family “pod” model
Creative activity programming for the whole family

At least one parent and/or caregiver per family needs to be in attendance
Programming is geared toward ages 5-17. Ages 5 and under are welcome to attend, but there will not be any childcare/supervision provided

Boxed lunch and snacks during event
CHT t-shirt and other swag!

Dates, Times & Locations:

Saturday, July 31st, 10:00 am – 2:00 pm – Location: Lake Fairfax Park, Fairfax
Saturday, August 7th, 10:00 am – 2:00 pm – Location: Sandy Bottom Nature Park, Hampton
Saturday, August 14th, 10:00 am – 2:00 pm – Location: Camp Holiday Trails, Charlottesville

*Only one day program/location per family
Fees: Free!
Final decisions for eligibility are determined by VHF, HACA, and CHT using Program Registration Guidelines.
All in-person safety protocols will be based upon the recommendations of the Camp Holiday Trails Medical Advisory Committee, and they will continue to monitor local, state, and federal guidelines.
Thank you to our sponsors: Accredo, Bayer, CSL Behring, CVS Health, Genentech, Grifols, Hemophilia Federation of America (HFA), Hoos at Home, Novo Nordisk, Pfizer, Sanofi Genzyme, Superior Biologics, and Takeda

Virtual Education Session - Gratitude Nation
2021-08-05 19:00 - 20:00 | Zoom
» RSVP Here
Topic: 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
Thank you to our sponsor Sanofi Genzyme

This session is free and open to VHF constituents, any constituent under the age of 12 will need adult supervision to participate.
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.

VHF & HACA Pop-Up Day Program for Families
2021-08-07 10:00 - 14:00 | Sandy Bottom Nature Park, 1255 Big Bethel Road, Hampton, VA, 23669

VHF & HACA Pop-Up Day Program for Families
2021-08-14 10:00 - 14:00 | Camp Holiday Trails, 400 Holiday Trails Lane, Charlottesville, VA, 22903

Virtual Education Session - Lesson Plans: Navigating School with a Bleeding Disorder
2021-08-19 19:00 - 20:00 | Zoom
» RSVP Here
Topic: Lesson Plans: Navigating School with a Bleeding Disorder
Learn how students, parents, family members, and school staff can work together to provide a positive learning environment for students with a bleeding disorder—from preschool through college.
Speaker: Jan Martin, Nurse Educator, Takeda
Thank you to our sponsor Takeda

This session is free and open to VHF constituents, any constituent under the age of 12 will need adult supervision to participate.
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.

Virtual Education Session – Balancing Emotional Well-Being
2021-09-16 19:00 - 20:00 | Zoom
» RSVP HERE

Topic: Balancing Emotional Well-Being
An overview of how our current environment can impact our emotional well-being, what signs and symptoms to look for when you find yourself in a challenging situation or feeling low, and how to encourage dialogue with family, friends, and healthcare providers.
Speaker: Linda Pollhammer | Patient Affairs Liaison – Pfizer
Thank you to our sponsor Pfizer

This session is free and open to VHF constituents, any constituent under the age of 12 will need adult supervision to participate.
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.

VHF/HACA Advocacy Chat - Getting into Committee
2021-09-28 19:00 - 20:00 | Zoom
» RSVP HERE
Ever wonder how a bill winds its way from a proposed bill, through both houses of the General Assembly to enacted legislation? Committees are the answer — and where much of the debate about any bill take place. Join us to learn more about the process as we hear from State Senator Ghazala F. Hashmi and Delegate Roxann Robinson – key committee members that work on issues that affect our community.
Thank you to our sponsors: National Hemophilia Foundation (NHF) and Takeda
Read this article for more information on how to join a virtual meeting on the zoom platform using a desktop computer, mobile device/tablet, from a landline or a mobile phone. If you need assistance or have any barriers that are keeping you from participating in virtual programs please call 804-740-8643 or email info@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.

Unite For Bleeding Disorders Virtual Walk
2021-10-17 13:00 - 14:00 | Zoom
REGISTER
We are very excited to announce registration is open for the 2021 Virginia Hemophilia Foundation VIRTUAL Unite for Bleeding Disorders Walk!
9/12/21 – We have made the difficult decision to move the VHF Unite for Bleeding Disorders Walk to a virtual only opportunity. Given current COVID-19 transmission rates in Virginia and CDC and VDH guidance regarding the risk of in-person events VHF has decided to shift this event to a virtual platform for the health and safety of our community members.
We are excited for the opportunity to celebrate with all of our teams and sponsors on Zoom at 1 pm on Sunday October 17th!
All teams that are registered by Thursday October 7th, will receive a walk box with all the supplies you need for an at-home walk experience, including t-shirts for any participants that raised $25 or more. Please make plans to distribute these materials to your team members before walk day!
UNITE WALK VIRTUAL PROGRAM AGENDA
1:00 pm: Zoom Opens for Participants, Team Roll Call
1:05 pm: Welcome & Awards
1:10 pm: Sponsor Recognition
1:25 pm: Entertainment with Jonathan the Juggler
1:55 pm: Closing Remarks, Pinwheel Ceremony and Start Your Walk!
We hope you will join us on Zoom on October 17th, because this event is about more than just fundraising. This is a day where our community and everyone who supports it can come together, even when apart, to celebrate each other and support each other! The event will include live entertainment from magician Jonathan Austin and fun for people of all ages!
Unite with us Today
For more information contact Megan Schowengerdt at 804-740-8643 or megan@vahemophilia.org.
PLUS register and raise or donate $100 in new donations in September and get entered to win a $50 gift card to Sheetz! Join Us and Start Your Team Today!

VHF/HACA Virtual Men's Health & Wellness Retreat
2021-11-06 16:00 - 18:00 | Zoom
» RSVP HERE!
In partnership with the Hemophilia Association of the Capital Area (HACA), we are offering a virtual Men’s Health & Wellness Retreat!
Participants will enjoy meaningful education and time to gather and share with other people who encounter similar challenges. This retreat is free and open to men age 21 and up with inherited bleeding disorders and/or to men whose lives are impacted by a bleeding disorder (i.e. caregivers, spouses, immediate family members).
What to Expect:

Interactive fun-filled music trivia with Shelby Smoak, Ph.D., Advocate & Education Specialist, Biomatrix.
Hints and recommendations for living a healthier lifestyle and ideas for home fitness with Zack Bordone, PTA, CSCS, PN, National Wellness Director, DrugCo Health.

Tech neck and lower back pain remedies, office ergonomics, quick information about KT tape, nutrition and supplements to make you feel your best.

Cooking demonstration with Mike Hargett – a professional chef, double transplant recipient, and person with hemophilia who lives by the mantra that his conditions don’t define him; he defines them.

You will learn how to make “Sexy Sheet Pan Gnocchi with Sausage, Mushrooms, and Peppers” – a healthy, weeknight meal and how to put together your own Italian spice blend from scratch!

HFA Rap Session

Please RSVP by November 3rd so that VHF can send the recipe and ingredients list ahead of time along with an Amazon gift card so you can purchase what you need. Thanks to Colburn-Keenan Foundation for sponsoring this piece of the event.

Thank you to our generous sponsors: BioMarin, BioMatrix, CSL Behring, DrugCo Health, Genentech, Hemophilia Federation of America (HFA), Novo Nordisk, 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.

» RSVP HERE

VHF/HACA Virtual Advocacy Stakeholder and Education Meeting
2021-11-13 16:00 - 18:00 | 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
Non-profit Policy Advocacy and the Executive Branch: Lessons learned on policy and politics in Health Care Melissa Assalone, MSW, Deputy Legislative Director for Governor Northam, and Freddy Mejia, MSW, Policy Analyst, The Commonwealth Institute for Fiscal Analysis
Virginia Bleeding Disorder Program (VBDP) Update Jan Kuhn RN, MPH, Coordinator of VBDP
State Update AND What Can We Expect in 2022 General Assembly Becky Bowers-Lanier, VHF/HACA Advocacy Consultant
Federal Update Miriam Goldstein, J.D, Director of Policy at Hemophilia Federation of America (HFA) and Nathan Schaefer, Vice President of Public Policy at National Hemophilia Foundation (NHF)

Thank you to our sponsors: CVS Caremark, Genentech, National Hemophilia Foundation (NHF), and Takeda
» Please go here to view our Virtual Sponsor Program This program is one way our generous sponsors can virtually connect with the community by providing links to their electronic resources, brochures, websites, social media sites and more!

Read this article for more information on how to join a virtual meeting on the zoom platform using a desktop computer, mobile device/tablet, from a landline or a mobile phone. If you need assistance or have any barriers that are keeping you from participating in virtual programs please call 804-740-8643 or email info@vahemophilia.org.

Virtual Community Retreat - Paint Night
2021-11-18 19:00 - 20:00 | Zoom
» RSVP HERE BY NOVEMBER 5TH!
Join VHF for a highly interactive and engaging evening of virtual community connection and a family-friendly paint night. Painting is a great way to help pass the time and cope with stress so bring your creativity and a willingness to learn and you will paint a fall themed painting you’ll be proud to display in your home!
Paint Night Activity – What To Expect: Enjoy all the fun and interaction of a paint night event from the safety of your home.

Event will be held on the zoom platform and led by Been Creative
Register by November 5th and you will receive in the mail: Paint, paintbrushes, an 11”x14” canvas (pre-sketched with a fall themed design), an apron and a tabletop easel. Thanks to Colburn-Keenan Foundation for sponsoring this piece of the event.

This session is free and open to VHF constituents, any participant under the age of 12 will need adult supervision to participate.

» Please go here to view our Virtual Community Retreat Electronic Program This program is one way our generous sponsors can virtually connect with the community by providing links to their electronic resources, brochures, websites, social media sites and more!
We could not provide this important event without the help of our generous sponsors.
Hemophilia Federation of America (HFA)
Premier Sponsors: Hoos at Home and Takeda
Corporate Sponsors: Bayer, BioMarin, CSL Behring, CVS Health, Genentech, Novo Nordisk, Octapharma, and Sanofi Genzyme

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.

» RSVP HERE BY NOVEMBER 5TH!

Virtual Winter Gathering
2021-12-04 14:00 - 15:00 | Zoom
» RSVP HERE BY NOVEMBER 22ND

Join VHF and your bleeding disorders community for some virtual holiday cheer!
What to Expect – There will be all-ages ornament decorating led by Michelle Stielper, Regional Care Coordinator – Biomatrix, (ornament kits will be shipped directly to attendees) and you will not want to miss everyone’s favorite game show host, Shelby Smoak, Ph.D., Advocate & Education Specialist – BioMatrix, in a holiday themed trivia game. Test your holiday and bleeding disorders knowledge in this spirited, interactive event. There will be education, gift cards (Thanks to Colburn-Keenan Foundation), special guests from the north pole, banter, jests, and endless fun. Laughs are a must! Please join and share in the holiday spirit.
This free virtual event will give you a chance to experience community connection from the comfort of your home. Great for individuals and families and designed for all ages to enjoy (open to VHF constituents, any constituent under the age of 12 will need adult supervision to participate.)

Thank you to our generous sponsors: Bayer, BioMatrix, CSL Behring, Hemophilia Federation of America (HFA), Hoos at Home, Novo Nordisk, and Takeda
» Please go here to view our Virtual Sponsor Program This program is one way our generous sponsors can virtually connect with the community by providing links to their electronic resources, brochures, websites, social media sites and more!

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.

» RSVP HERE BY NOVEMBER 22ND

VHF & HACA Virtual Advocacy Education Meeting
2022-01-17 19:00 - 20:00 | Zoom
» RSVP HERE

Join VHF & HACA for a virtual advocacy education program on Martin Luther King Jr. Day, our traditional date for our annual advocacy day. This program will focus on the 2022 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 2022 General Assembly session and how you might be able to get more involved.
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.

Thank you to our sponsors: Genentech, National Hemophilia Foundation (NHF), Pfizer, and Takeda.
» Please go here to view our Virtual Sponsor Program This program is one way our generous sponsors can virtually connect with the community by providing links to their electronic resources, brochures, websites, social media sites and more!

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.

HACA/VHF General Assembly Weekly Check-In
2022-01-25 - 2022-03-08 | Zoom
» REGISTER HERE

Join HACA and VHF 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.
When you register you will receive an email with a re-occurring zoom link that you can use for all of the weekly check-ins on Tuesdays at 4:30 pm (EST).
Jan 25, 2022 4:30 PM
Feb 1, 2022 4:30 PM
Feb 8, 2022 4:30 PM
Feb 15, 2022 4:30 PM
Feb 22, 2022 4:30 PM
Mar 1, 2022 4:30 PM
Mar 8, 2022 4:30 PM
This session is free and open to VHF constituents, any constituent under the age of 12 will need adult supervision to participate.
Thank you to our advocacy sponsor Takeda.

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.

Virtual Education Session - Keeping and Maintaining Health Insurance During Uncertain Times
2022-01-27 19:00 - 20:00 | Zoom
» RSVP HERE

Topic: Keeping and Maintaining Health Insurance During Uncertain Times
Get your insurance questions answered and learn more about:
Prior authorizations – commercial plans and documentation required for initial authorization/reauthorizations.
Medicare eligibility and Medigap enrollment.
Additional protections under the Build Back Better infrastructure bill.
Speaker: Lynne M. Szott, RN, RMC, CCM, Senior Manager, Reimbursement & Access, CSL Behring

Thank you to our sponsor CSL Behring

This session is free and open to VHF constituents.
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.

Virtual Teen Advocacy Event: Self-Advocacy for Teens
2022-01-29 16:00 - 17:00 | Zoom
» RSVP HERE

Topic: Self-Advocacy for Teens
This highly interactive advocacy program explains the different types of advocacy and engages participants in conversations about self-advocacy. Participants will problem solve situations that can occur at the doctor’s, at school, at work, and will work through other real world scenarios related to self-advocacy for persons with a bleeding disorder. This is a great opportunity to get your teen thinking about how they can talk about their bleeding disorder.
Speaker: Shelby Smoak, Ph.D., Advocate and Education Specialist, BioMatrix

Thank you to our teen advocacy event sponsors: BioMatrix, CSL Behring and Takeda

This program is free and for teens age 13–17 who live within HACA/VHF territory and meet one of the following criteria: Have a bleeding disorder, are the sibling of someone with a bleeding disorder and/or have a parent/caregiver with a bleeding disorder. Each session must be signed up for individually, you do not have to sign up for all in order to participate.
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.

Virtual Education & Community Craft Night "No Sew Pillows"
2022-02-10 19:00 - 20:00 | Zoom
RSVP HERE

Join VHF for a highly interactive and engaging evening of virtual community connection and education at our family-friendly craft night. Learn how crafting is a great way to help pass the time and cope with stress. So bring your creativity and a willingness to learn and you will make a “No Sew Pillow” there will be two patterns to choose from, either a Valentines themed heart shaped pillow or recycle a favorite t-shirt into a square throw pillow! The possibilities are endless.
What to Expect – There will be a virtual, guided, and simple no sew pillow making instruction led by Michelle Stielper, Regional Care Coordinator, BioMatrix. You should have most materials on-hand (think scissors, old t-shirt) and VHF will be in touch closer to the event to make sure you have anything else that you need to participate. You will not want to miss everyone’s favorite DJ, Shelby Smoak, Ph.D., Advocate & Education Specialist – BioMatrix, in a Valentine themed music trivia game!
This free virtual event will give you a chance to experience community connection and education from the comfort of your home. Great for individuals and families and designed for all ages to enjoy (open to VHF constituents, any constituent under the age of 12 will need adult supervision to participate.)
Thank you to our sponsors: BioMatrix, 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.

Virtual Education and Connection - Spark Your Curiosity Escape Room
2022-02-20 16:00 - 17:00 | Zoom
RSVP HERE
Spark your curiosity and join us in playing an exciting virtual adventure! Unlock the science of gene therapy research… before time runs out!
An interactive educational program sponsored by Spark® Therapeutics in collaboration with VHF. If you like escape rooms, puzzles, and teamwork, this is one event you don’t want to miss. Join a team to journey through a quest in this virtual adventure, where solving each clue gets you one step closer to unlocking the science of gene therapy research. Time is ticking… so sign up today!
This free virtual event will give you a chance to experience community connection and education from the comfort of your home. Great for individuals and families and designed for all ages to enjoy (open to VHF constituents, any constituent under the age of 12 will need adult supervision to participate.)
Thank you to our sponsors: Spark® Therapeutics

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.

National Hemophilia Foundation (NHF) Washington Days
2022-03-01 - 2022-03-02 | Virtual
RSVP HERE
NHF’s Washington Days is an opportunity for people affected by inherited blood disorders to advocate for issues that are important to them. In 2021, Washington Days had more than 400 volunteer advocates from 44 states that met with legislators and staff to discuss federal funding for bleeding disorder programs and support policies that increase affordability of coverage and access to care.
Washington Days 2022 will be an entirely virtual experience. NHF is closely monitoring various legislative and policy opportunities as they prepare for their event in March. The issues and priorities for Washington Days 2022 will be announced at the start of the new year. » Go here to learn more
