Virginia Bleeding Disorders Foundation

Advocacy Chat with Delegate Kathleen Murphy
2021-05-27 19:00 - 20:00 (America/New_York) | 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.

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.

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.

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.

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.

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.

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 - 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.

HACA/VHF General Assembly Weekly Check-In
2021-02-23 16:30 - 17:00 | 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.

VHF/HACA Virtual Men's Rap Session - Winter 2021
2021-02-18 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!
Participants will enjoy time to gather and share with other men who encounter similar challenges. 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).

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.

HACA/VHF Teen Task Force Advocacy Program
2021-01-31 16:00 - 17:00 | Zoom
» Go here to RSVP
Join HACA and VHF on Sunday, January 31, at 4 pm for an interactive Teen Task Force advocacy program. Shelby Smoak of Biomatrix will lead the session as we discuss various scenarios often encountered by teens and how advocacy can be used in each situation. There will also be an exciting game of trivia to try out your new advocacy skills and knowledge.
This program is 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.
All minor participants must be registered for the event by a parent. Both the parent and the minor must agree to the statements on the registration page of Constant Contact. A parent must be nearby during the duration of the session. There are two steps to register for the event: through Constant Contact, and then through Zoom. Once you register in Constant Contact, you will receive an email with instructions and a link to register through Zoom.
Thank you to our sponsors Genentech, Pfizer, and Takeda
For questions contact:
Patti Williford
Hemophilia Association of the Capital Area (HACA)
703-352-7641
admin@hacacares.org

Virtual Education Session - What to do in a Hemophilia Emergency
2021-01-28 19:00 - 20:00 | Zoom
» RSVP HERE

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)!
Topic: What to do in a Hemophilia Emergency
An interactive presentation which outlines preparation for an emergency as well as how to advocate for you or your loved one with Hemophilia.
Speaker: Linda Peacock, RN,BSN,MBA | Bayer Healthcare Pharmaceuticals, Hematology Nurse Educator-East
Thank you to our sponsor Bayer

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.

HACA/VHF Advocacy Education Program
2021-01-18 18:30 - 19:30 | Zoom
» RSVP Here
Since we cannot gather in person, join HACA and VHF 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 2021 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 HACA/VHF legislative updates that will occur weekly via zoom during the 2021 General Assembly session and how you might be able to get more involved. 2021 General Assembly Session Dates: January 13th – February 11th – 2021
Thank you to our sponsors Pfizer, Sanofi Genzyme, and 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.
» RSVP Here

Virtual Education Session - Mindfulness as a Path to Resilience
2020-12-15 19:00 - 20:00 | Zoom
» RSVP HERE
Join us for a virtual education session for individuals with an inherited bleeding disorder.
The topic will be: Mindfulness as a Path to Resilience
What is mindfulness and what are its benefits? How are stress and resilience related, and why is resilience important? This presentation will offer patients a set of skills that they may use at home, on their own.
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 Winter Gathering
2020-12-05 14:00 - 15:00 | Zoom
» RSVP HERE

Join VHF and your bleeding disorders community for some virtual holiday cheer!
There will be ginger bread house decorating led by Michelle Stielper, Regional Care Coordinator – Biomatrix, (gingerbread house 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 that includes rounds of “Name that Holiday Song.” Test your holiday knowledge in this spirited, interactive event. There will be education, door prizes, banter, jests, and endless fun. Laughs are a must! Please join and share in the holiday spirit.
This 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. » RSVP HERE

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 video meeting etiquette and rules of engagement.
Thank you to our generous sponsors Bayer, BioMatrix, CSL Behring, Genentech, Hoos at Home, Colburn-Keenan Foundation, Inc., Pfizer and Takeda.
We could not provide these important events without the help of our generous sponsors – 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!

Virtual Education Session - Balancing Emotional Well-Being featuring Bullying
2020-11-19 19:00 - 20:00 | Zoom
» RSVP HERE

Topic: Balancing Emotional Well-Being featuring Bullying
An overview of how mental health disorders impact the hemophilia community with a focus on cyber, social and physical bullying. Also, how caregivers can help their kids/teenagers with bullies as well as talking about the 504 plan for school.
Speaker: Annie Sukhnandan | 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 Virtual Advocacy Stakeholder and Education Meeting
2020-11-14 16:00 - 18:00 | Zoom
» RSVP HERE

Join HACA/VHF 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!
Saturday, November 14, 2020 | 4 PM to 6 PM
Agenda –

Welcome/Introductions
Health Policy in the Intersection of Policy and Politics – Del. Dawn Adams (D, 68th)
Virginia Bleeding Disorder Program (VBDP) Update – Jan Kuhn RN, MPH, Coordinator of VBDP
State Update AND What Can We Expect in 2021 General Assembly – Becky Bowers-Lanier, VHF/HACA Advocacy Consultant
Federal Update – Miriam Goldstein, J.D, Director of Policy at Hemophilia Federation of America (HFA)/Nathan Schaefer, Vice President of Public Policy at National Hemophilia Foundation (NHF)
Wrap-Up

Thank you to our advocacy sponsors: Bayer, CSL Behring, CVS Caremark, Genentech, National Hemophilia Foundation (NHF), PhRMA, Pfizer, Sanofi Genzyme, and Takeda
We could not provide these important events without the help of our generous sponsors – 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!

VHF/HACA Virtual Men's Retreat
2020-11-08 14:00 - 16:00 | Zoom
» RSVP HERE

In partnership with the Hemophilia Association of the Capital Area (HACA), we are offering a virtual Men’s Retreat! Participants will enjoy 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).
Sunday, November 8th
2:00 pm – HFA Rap Session and Virtual Beer Tasting Class
3:00 pm – Singing to Heal
Join Shelby Smoak, Ph.D., Advocate & Education Specialist, Biomatrix, for an interactive discussion of music, the brain, and healing. This program empowers participants to tap into the healing power of music and into sharing the emotional experience with others. Finish off with a fun-filled music trivia game! This version of music trivia will contain a special 1980s round. This event promises to be a song-filled experience.

Thank you to our generous sponsors: Accredo, Biomatrix, CSL Behring, Genentech, Hemophilia Federation of America (HFA), Colburn-Keenan Foundation, Inc., Novo Nordisk, 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.

Virtual Education Session: 10 Tips for Supporting Your Child’s Academic Success During COVID-19
2020-11-06 12:00 - 13:00 | Zoom
» RSVP HERE

Topic: 10 Tips for Supporting Your Child’s Academic Success During COVID-19
This presentation discusses the timeline between the statewide closure of all public schools in March to present day instructional schedules. The main purpose is to provide parents with a variety of strategies to support virtual learning at home.
Speaker: Robyn Evans, Educational Consultant, M.Ed.
Hospital Education Program, University of Virginia Children’s Hospital

Thank you to our sponsors Bayer, Genentech, Hemophilia Federation of America (HFA), Novo Nordisk and Takeda
We could not provide these important events without the help of our generous sponsors – 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!

RESOURCES FOR PARENTS:
If you missed this program you can watch the recording here.
https://www.doe.virginia.gov/support/health_medical/office/reopen-status.shtml
https://www.cdc.gov/coronavirus/2019-ncov/community/schools-childcare/parent-checklist.html
https://www.doe.virginia.gov/instruction/virtual_learning/support-virtual-learning/index.shtml
https://www.childrenandscreens.com/media/press-releases/covid-19-and-at-home-learning/
https://www.healthychildren.org/English/health-issues/conditions/COVID-19/Pages/Working-and-Learning-from-Home-COVID-19.aspx
https://www.edutopia.org/
https://pbskids.org/grownups/
https://www.understood.org/
https://www.commonsense.org/
https://www.commonsensemedia.org/

Virtual Community Event - Happy Haunts Cookie Decorating Class
2020-10-29 19:00 - 20:00 | Zoom
» RSVP Here

Fall is here and that means that it’s time for some family-friendly Halloween fun! Put on your Halloween costume and join us for a cookie decorating experience as Hemo mom and cookie decorating extraordinaire, Destinee Diprima, leads us through some simple decorating tips and “tricks” this Halloween season with a live virtual class “Happy Haunts Virtual Cookie Decorating Class”!
This class is perfect for all skill levels and a list of tools and ingredients will be sent out beforehand. Financial support is available to those that need help purchasing ingredients or supplies.
This spooktacular event will include fun door prizes for best costume, most creative cookie and more!
Thank you to our community event sponsors Diplomat/Optum, Hoos at Home, Novo Nordisk and 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 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.

HACA/VHF Advocacy Committee Virtual Chat
2020-10-20 19:00 - 20:00 | online
Join the HACA/VHF advocacy committee for our virtual chat series. These chats focus on advocacy topics relevant to the bleeding disorders community!
Come join us to meet elected local and state representatives, Vaughn Ripley, Brunswick, Maryland City Council Member and State Representative Randi Clites (D-Ravenna), Ohio House District 75, who are from our own bleeding disorders community. Learn more about how they got involved and what they are doing to make a difference.
When you register you will receive instructions on how to join in, either by video conference or by phone call. Please join us!

» RSVP HERE

Understanding Gene Therapy Research and Its Potential Application to Hemophilia
2020-10-15 19:00 - 20:00 | Online
Understanding Gene Therapy Research and Its Potential Application to Hemophilia
A Program sponsored by Spark Therapeutics
Presented by: Laureen Temple, Sr Patient Education Liaison
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 in hemophilia today.

» Go Here to RSVP

Virtual Unite Walk For Bleeding Disorders
2020-10-10 11:00 - 14:00 | Online
What’s a virtual walk? A virtual walk means you can join VHF on Zoom at 11:00 am on October 10th to enjoy a fun, pre-walk program and to say “hi” to other participants – and then we hope you will gather safely for a park or a neighborhood walk that day to celebrate your fundraising accomplishments and in solidarity with our inherited bleeding disorders community from all over Virginia! However you choose to walk, you are an important part of VHF and our mission.
Date: Saturday, October 10, 2020
Time: 11:00 am
Location: Virtual! Register for the walk and you will receive the zoom link to join us for a fun, family friendly virtual walk program!
Registration: www.uniteforbleedingdisorders.org/event/rva
Cost: There is no cost to participate but fundraising is highly encouraged!
» Go here to see our generous 2020 sponsors
For more information contact Megan Schowengerdt at 804-740-8643 or megan@vahemophilia.org.

Virtual Community Retreat
2020-09-27 14:00 - 16:00 | Online
Join VHF and your bleeding disorders community for a program designed for increasing knowledge and connection! Sunday, September 27th from 2:00 to 4:00 pm » RSVP HERE
We could not provide these important events without the help of our generous sponsors – please go here to view our Virtual Community Retreat 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 would also like to thank our speaker sponsor Hemophilia Federation of America.
Industry Symposium
At the start of this session you will hear from our industry sponsors who will provide a brief overview of their company, products, and/or available services for you to learn more about how they are supporting and serving the inherited bleeding disorders community.
Education Presentation: New and Upcoming Bleeding Disorder Treatments with Steven W. Pipe, MD
Dr. Pipe will present about the new and upcoming treatments within the bleeding disorders space. Topics of discussion span multiple bleeding disorders, and touch on various novel, and some not-so-novel treatments.

Bio: Steven Pipe, MD
Dr Steven Pipe is a Professor and the Laurence A. Boxer Research Professor of Pediatrics and Communicable Diseases, as well as Professor of Pathology at the University of Michigan, Ann Arbor, Michigan, USA. He is the medical director of the Pediatric Hemophilia and Coagulation Disorders Program and medical director of the Special Coagulation Laboratory at the University of Michigan. His clinical interests include bleeding and thrombotic disorders and congenital vascular anomalies. Dr Pipe also directs a basic research lab investigating coagulation factor VIII and the molecular mechanisms of hemophilia A.Dr Pipe completed his undergraduate medical training at the University of Toronto, Ontario, Canada, and his pediatric training at McMaster University in Hamilton, Ontario. His pediatric hematology and oncology training was completed at the University of Michigan. He was a fellow of the Pediatric Scientist Development Program Dr Pipe is certified by the American Board of Pediatrics in pediatric hematology/oncology. He was awarded a Young Investigator Award from both the American Society of Pediatric Hematology and Oncology and the International Society on Thrombosis and Haemostasis, and a Faculty Scholar Award from the American Society of Hematology. He was the 2015 recipient of the Leadership in Research Award from the National Hemophilia Foundation. He has served on the Board of Directors for the Hemostasis and Thrombosis Research Society, as Chair of the Board of Directors for the American Thrombosis and Hemostasis Network and currently the Chair of the Medical and Scientific Advisory Committee to the National Hemophilia Foundation.

» GO HERE TO RSVP

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.

Friendly Feud - Virtual Community Game Night
2020-09-17 19:00 - 20:00 | Online
Join VHF for a highly interactive and engaging game of Friendly Feud! An educational take on everyone’s favorite Family Feud using bleeding disorder trivia! This virtual game night 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. » RSVP HERE
Hosted by: Shelby Smoak, Ph.D. Advocate & Education Specialist, BioMatrix
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 video meeting etiquette and rules of engagement.
Sponsored by BioMatrix

» Go Here to RSVP

HACA/VHF Advocacy Committee Virtual Chat
2020-09-15 19:00 - 20:00 | online
Join the HACA/VHF advocacy committee for our virtual chat series. These chats focus on advocacy topics relevant to the bleeding disorders community!
During our chat we will learn more about the Board of Pharmacy and how their work can significantly impact the bleeding disorders community.
For September’s chat we will be joined by Cynthia L. W. Warriner, BS, RPh, CDE, who served on the Virginia Board of Pharmacy as Chairman, she had been an active member of the board since she was first appointed in 2012. In recent years, Warriner has led regional initiatives to decrease the rate of adverse drug events (ADEs) in Virginia and Maryland, as well as finding innovative ways to improve the patient experience and engage pharmacists in community-based care transitions initiatives.
When you register you will receive instructions on how to join in, either by video conference or by phone call. Please join us!

» RSVP Here

June for Joint Health Webinar
2020-09-03 19:00 - 20:00 | Online
Topic: June for Joint Health
Presenter: Angela Forsyth, PT, DPT, Director of the REBUILD Physical Therapy Program with Diplomat/ Optum Specialty Infusion
Join us for an active and educational June for Joint Health webinar. Learn how you can start to form healthy habits by incorporating joint-focused stretches into your daily routine. As always, talk to your healthcare team before starting any physical activity.

» RSVP Here

Red Tie Online Auction
2020-07-24 12:00 - 2020-07-27 12:00 | online
Join us for an incredible online auction Friday, July 24th at 12:00 pm through Monday, July 27th at 12:00 pm!
Bid on awesome travel, food, entertainment and more from the comfort of your own home. All proceeds will benefit VHF and our mission of serving and supporting the needs of those impacted by a bleeding disorder through education, advocacy and community.
Our spring fundraiser, The Red Tie Soiree, was cancelled due to COVID-19, but we have many wonderful auction items that are available for you now!
» Go Here to Register to Bid and to see the Auction Catalog

Virtual Education Session "Balancing Emotional Well-Being"
2020-07-22 19:00 - 20:00 | Online
Topic: Balancing Emotional Well-Being
Speaker: Annie Sukhnandan | Patient Affairs Liaison Pfizer
An overview of how mental health disorders impact the hemophilia community, what signs/symptoms to look for, and how to encourage dialogue with caregivers and health care providers.
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.
Sponsored by Pfizer

» Go Here to RSVP

HACA/VHF Advocacy Committee Virtual Chat
2020-07-14 19:00 - 20:00 | Online
Join the HACA/VHF advocacy committee for a virtual chat. This virtual chat is also a part of our Teen Retreat Virtual Education Series and we invite VHF/HACA teens age 13–17 to participate!
Topic: Virtual Reality: Advocacy Meetings in the Age of Zoom
Come join us for an interactive discussion on the how-to’s of setting up and leading a virtual advocacy call with your legislator!
When you register you will receive instructions on how to join in, either by video conference or by phone call. Please join us!

» RSVP Here
