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X-WR-CALDESC:Events for Virginia Bleeding Disorders Foundation
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DTSTART;TZID=America/New_York:20220210T190000
DTEND;TZID=America/New_York:20220210T200000
DTSTAMP:20260405T133001
CREATED:20211213T221411Z
LAST-MODIFIED:20220210T190157Z
UID:5891-1644519600-1644523200@vahemophilia.org
SUMMARY:Virtual Education & Community Craft Night "No Sew Pillows"
DESCRIPTION:RSVP HERE \n  \nJoin 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. \nWhat 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! \nThis 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.) \nThank you to our sponsors: BioMatrix\, CSL Behring\, Genentech\, and Takeda \n\nAs 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. \n  \n 
URL:https://vahemophilia.org/event-program/5891/
LOCATION:Zoom
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220129T160000
DTEND;TZID=America/New_York:20220129T170000
DTSTAMP:20260405T133001
CREATED:20220111T184003Z
LAST-MODIFIED:20220111T184003Z
UID:5904-1643472000-1643475600@vahemophilia.org
SUMMARY:Virtual Teen Advocacy Event: Self-Advocacy for Teens
DESCRIPTION:» RSVP HERE\n\nTopic: Self-Advocacy for Teens \nThis 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. \nSpeaker: Shelby Smoak\, Ph.D.\, Advocate and Education Specialist\, BioMatrix\n \nThank you to our teen advocacy event sponsors:  BioMatrix\, CSL Behring and Takeda \n\nThis 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. \nAs 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.
URL:https://vahemophilia.org/event-program/virtual-teen-advocacy-event-self-advocacy-for-teens/
LOCATION:Zoom
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220127T190000
DTEND;TZID=America/New_York:20220127T200000
DTSTAMP:20260405T133001
CREATED:20211116T204521Z
LAST-MODIFIED:20211208T235725Z
UID:5861-1643310000-1643313600@vahemophilia.org
SUMMARY:Virtual Education Session - Keeping and Maintaining Health Insurance During Uncertain Times
DESCRIPTION:» RSVP HERE\n\nTopic: Keeping and Maintaining Health Insurance During Uncertain Times \nGet your insurance questions answered and learn more about:\nPrior authorizations – commercial plans and documentation required for initial authorization/reauthorizations.\nMedicare eligibility and Medigap enrollment.\nAdditional protections under the Build Back Better infrastructure bill. \nSpeaker: Lynne M. Szott\, RN\, RMC\, CCM\, Senior Manager\, Reimbursement & Access\, CSL Behring\n \nThank you to our sponsor CSL Behring \n\nThis session is free and open to VHF constituents. \nAs 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.
URL:https://vahemophilia.org/event-program/virtual-education-session-keeping-and-maintaining-health-insurance-during-uncertain-times/
LOCATION:Zoom
CATEGORIES:advocacy,education,virtual chat
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220117T190000
DTEND;TZID=America/New_York:20220117T200000
DTSTAMP:20260405T133001
CREATED:20211116T193321Z
LAST-MODIFIED:20220125T142452Z
UID:5859-1642446000-1642449600@vahemophilia.org
SUMMARY:VHF & HACA Virtual Advocacy Education Meeting
DESCRIPTION:» RSVP HERE\n\nJoin 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. \nThis session is free and open to anyone interested in learning more about advocacy and how it relates to the Virginia inherited bleeding disorders community. \n\nThank you to our sponsors: Genentech\, National Hemophilia Foundation (NHF)\, Pfizer\, and Takeda. \n» 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! \n\nAs 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.
URL:https://vahemophilia.org/event-program/vhf-haca-virtual-advocacy-education-meeting/
LOCATION:Zoom
CATEGORIES:advocacy,education,virtual chat
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20211204T140000
DTEND;TZID=America/New_York:20211204T150000
DTSTAMP:20260405T133001
CREATED:20211006T031607Z
LAST-MODIFIED:20211118T202822Z
UID:5821-1638626400-1638630000@vahemophilia.org
SUMMARY:Virtual Winter Gathering
DESCRIPTION:» RSVP HERE BY NOVEMBER 22ND\n\nJoin VHF and your bleeding disorders community for some virtual holiday cheer! \nWhat 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. \nThis 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.) \n\nThank you to our generous sponsors: Bayer\, BioMatrix\, CSL Behring\, Hemophilia Federation of America (HFA)\, Hoos at Home\, Novo Nordisk\, and Takeda \n» 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! \n\nAs 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. \n\n» RSVP HERE BY NOVEMBER 22ND \n 
URL:https://vahemophilia.org/event-program/virtual-winter-gathering-2/
LOCATION:Zoom
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20211118T190000
DTEND;TZID=America/New_York:20211118T200000
DTSTAMP:20260405T133001
CREATED:20210714T155355Z
LAST-MODIFIED:20211013T145920Z
UID:5562-1637262000-1637265600@vahemophilia.org
SUMMARY:Virtual Community Retreat - Paint Night
DESCRIPTION:» RSVP HERE BY NOVEMBER 5TH! \nJoin 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! \nPaint Night Activity – What To Expect: Enjoy all the fun and interaction of a paint night event from the safety of your home. \n\nEvent will be held on the zoom platform and led by Been Creative\nRegister 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.\n\n This session is free and open to VHF constituents\, any participant under the age of 12 will need adult supervision to participate. \n\n» 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! \nWe could not provide this important event without the help of our generous sponsors.\nHemophilia Federation of America (HFA)\nPremier Sponsors: Hoos at Home and Takeda\nCorporate Sponsors: Bayer\, BioMarin\, CSL Behring\, CVS Health\, Genentech\, Novo Nordisk\, Octapharma\, and Sanofi Genzyme \n\nAs 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. \n\n» RSVP HERE BY NOVEMBER 5TH!
URL:https://vahemophilia.org/event-program/community-retreat/
LOCATION:Zoom
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20211113T160000
DTEND;TZID=America/New_York:20211113T180000
DTSTAMP:20260405T133001
CREATED:20210923T001103Z
LAST-MODIFIED:20211013T152208Z
UID:5801-1636819200-1636826400@vahemophilia.org
SUMMARY:VHF/HACA Virtual Advocacy Stakeholder and Education Meeting
DESCRIPTION:» RSVP HERE \nJoin 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! \nMEETING AGENDA \nNon-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 \nVirginia Bleeding Disorder Program (VBDP) Update Jan Kuhn RN\, MPH\, Coordinator of VBDP \nState Update AND What Can We Expect in 2022 General Assembly Becky Bowers-Lanier\, VHF/HACA Advocacy Consultant \nFederal 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) \n\nThank you to our sponsors: CVS Caremark\, Genentech\, National Hemophilia Foundation (NHF)\, and Takeda \n» 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! \n\nRead 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. 
URL:https://vahemophilia.org/event-program/vhf-haca-virtual-advocacy-stakeholder-and-education-meeting-2/
LOCATION:Zoom
ATTACH;FMTTYPE=image/jpeg:https://vahemophilia.org/wp-content/uploads/2020/09/49070330053_1e501533f5_o.jpg
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20211106T160000
DTEND;TZID=America/New_York:20211106T180000
DTSTAMP:20260405T133001
CREATED:20211006T025642Z
LAST-MODIFIED:20211102T145609Z
UID:5820-1636214400-1636221600@vahemophilia.org
SUMMARY:VHF/HACA Virtual Men's Health & Wellness Retreat
DESCRIPTION:» RSVP HERE! \nIn partnership with the Hemophilia Association of the Capital Area (HACA)\, we are offering a virtual Men’s Health & Wellness Retreat!  \nParticipants 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). \nWhat to Expect: \n\nInteractive fun-filled music trivia with Shelby Smoak\, Ph.D.\, Advocate & Education Specialist\, Biomatrix.\nHints and recommendations for living a healthier lifestyle and ideas for home fitness with Zack Bordone\, PTA\, CSCS\, PN\, National Wellness Director\, DrugCo Health.\n\n Tech neck and lower back pain remedies\, office ergonomics\, quick information about KT tape\, nutrition and supplements to make you feel your best.\n\n\nCooking 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.\n\nYou 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!\n\n\nHFA Rap Session\n\nPlease 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.   \n\nThank you to our generous sponsors: BioMarin\, BioMatrix\, CSL Behring\, DrugCo Health\, Genentech\, Hemophilia Federation of America (HFA)\, Novo Nordisk\, and Takeda \n\nAs 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. \n\n» RSVP HERE \n 
URL:https://vahemophilia.org/event-program/vhf-haca-virtual-mens-health-wellness-retreat/
LOCATION:Zoom
ATTACH;FMTTYPE=image/jpeg:https://vahemophilia.org/wp-content/uploads/2020/09/49071881157_a9be747366_o.jpg
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20211017T130000
DTEND;TZID=America/New_York:20211017T140000
DTSTAMP:20260405T133001
CREATED:20210512T164923Z
LAST-MODIFIED:20211008T123359Z
UID:5242-1634475600-1634479200@vahemophilia.org
SUMMARY:Unite For Bleeding Disorders Virtual Walk
DESCRIPTION:REGISTER \nWe are very excited to announce registration is open for the 2021 Virginia Hemophilia Foundation VIRTUAL Unite for Bleeding Disorders Walk! \n9/12/21 – 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. \nWe are excited for the opportunity to celebrate with all of our teams and sponsors on Zoom at 1 pm on Sunday October 17th! \nAll 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! \nUNITE WALK VIRTUAL PROGRAM AGENDA \n1:00 pm: Zoom Opens for Participants\, Team Roll Call \n1:05 pm: Welcome & Awards \n1:10 pm: Sponsor Recognition \n1:25 pm: Entertainment with Jonathan the Juggler \n1:55 pm: Closing Remarks\, Pinwheel Ceremony and Start Your Walk! \nWe 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! \nUnite with us Today \nFor more information contact Megan Schowengerdt at 804-740-8643 or megan@vahemophilia.org. \nPLUS 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! \n 
URL:https://vahemophilia.org/event-program/unite-for-bleeding-disorders-walk/
LOCATION:Zoom
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20210928T190000
DTEND;TZID=America/New_York:20210928T200000
DTSTAMP:20260405T133001
CREATED:20210818T191146Z
LAST-MODIFIED:20210920T194433Z
UID:5619-1632855600-1632859200@vahemophilia.org
SUMMARY:VHF/HACA Advocacy Chat - Getting into Committee
DESCRIPTION:» RSVP HERE \nEver 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. \nThank you to our sponsors: National Hemophilia Foundation (NHF) and Takeda \nRead 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.  \n\n\nAs 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.
URL:https://vahemophilia.org/event-program/vhf-haca-advocacy-chat-getting-into-committee/
LOCATION:Zoom
CATEGORIES:advocacy,education,virtual chat
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20210916T190000
DTEND;TZID=America/New_York:20210916T200000
DTSTAMP:20260405T133001
CREATED:20210818T192214Z
LAST-MODIFIED:20210818T192214Z
UID:5622-1631818800-1631822400@vahemophilia.org
SUMMARY:Virtual Education Session – Balancing Emotional Well-Being
DESCRIPTION:» RSVP HERE \n\nTopic: Balancing Emotional Well-Being \nAn 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. \nSpeaker: Linda Pollhammer | Patient Affairs Liaison – Pfizer \nThank you to our sponsor Pfizer \n\nThis session is free and open to VHF constituents\, any constituent under the age of 12 will need adult supervision to participate. \nAs 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.
URL:https://vahemophilia.org/event-program/virtual-education-session-balancing-emotional-well-being-2/
LOCATION:Zoom
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20210819T190000
DTEND;TZID=America/New_York:20210819T200000
DTSTAMP:20260405T133001
CREATED:20210719T142246Z
LAST-MODIFIED:20210719T142246Z
UID:5576-1629399600-1629403200@vahemophilia.org
SUMMARY:Virtual Education Session - Lesson Plans: Navigating School with a Bleeding Disorder
DESCRIPTION:» RSVP Here \nTopic: Lesson Plans: Navigating School with a Bleeding Disorder \nLearn 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. \nSpeaker: Jan Martin\, Nurse Educator\, Takeda \nThank you to our sponsor Takeda \n\nThis session is free and open to VHF constituents\, any constituent under the age of 12 will need adult supervision to participate. \nAs 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.
URL:https://vahemophilia.org/event-program/virtual-education-session-lesson-plans-navigating-school-with-a-bleeding-disorder/
LOCATION:Zoom
CATEGORIES:education
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20210814T100000
DTEND;TZID=America/New_York:20210814T140000
DTSTAMP:20260405T133001
CREATED:20210519T201442Z
LAST-MODIFIED:20210819T003140Z
UID:5360-1628935200-1628949600@vahemophilia.org
SUMMARY:VHF & HACA Pop-Up Day Program for Families
DESCRIPTION:» RSVP HERE \nPop-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. \nWE’RE TAKING CAMP ON THE ROAD! \nThis Summer we are working with Camp Holiday Trails to bring an in-person family camp day program to a park near you! \nWhat you can expect: \n\nA safe in-person event that will include protocols such as mask-wearing\, social distancing\, and using a family “pod” model\nCreative activity programming for the whole family\n\nAt least one parent and/or caregiver per family needs to be in attendance\nProgramming is geared toward ages 5-17. Ages 5 and under are welcome to attend\, but there will not be any childcare/supervision provided\n\n\nBoxed lunch and snacks during event\nCHT t-shirt and other swag!\n\nDates\, Times & Locations: \n\nSaturday\, July 31st\, 10:00 am – 2:00 pm – Location: Lake Fairfax Park\, Fairfax\nSaturday\, August 7th\, 10:00 am – 2:00 pm – Location: Sandy Bottom Nature Park\, Hampton\nSaturday\, August 14th\, 10:00 am – 2:00 pm – Location: Camp Holiday Trails\, Charlottesville\n\n*Only one day program/location per family \nFees: Free! \nFinal decisions for eligibility are determined by VHF\, HACA\, and CHT using Program Registration Guidelines. \nAll 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.  \nThank 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
URL:https://vahemophilia.org/event-program/vhf-haca-pop-up-day-camp-for-families-2/
LOCATION:Camp Holiday Trails\, 400 Holiday Trails Lane\, Charlottesville\, VA\, 22903
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20210807T100000
DTEND;TZID=America/New_York:20210807T140000
DTSTAMP:20260405T133001
CREATED:20210519T194923Z
LAST-MODIFIED:20210819T003052Z
UID:5354-1628330400-1628344800@vahemophilia.org
SUMMARY:VHF & HACA Pop-Up Day Program for Families
DESCRIPTION:» RSVP HERE \nPop-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. \nWE’RE TAKING CAMP ON THE ROAD! \nThis Summer we are working with Camp Holiday Trails to bring an in-person family camp day program to a park near you! \nWhat you can expect: \n\nA safe in-person event that will include protocols such as mask-wearing\, social distancing\, and using a family “pod” model\nCreative activity programming for the whole family\n\nAt least one parent and/or caregiver per family needs to be in attendance\nProgramming is geared toward ages 5-17. Ages 5 and under are welcome to attend\, but there will not be any childcare/supervision provided\n\n\nBoxed lunch and snacks during event\nCHT t-shirt and other swag!\n\nDates\, Times & Locations: \n\nSaturday\, July 31st\, 10:00 am – 2:00 pm – Location: Lake Fairfax Park\, Fairfax\nSaturday\, August 7th\, 10:00 am – 2:00 pm – Location: Sandy Bottom Nature Park\, Hampton\nSaturday\, August 14th\, 10:00 am – 2:00 pm – Location: Camp Holiday Trails\, Charlottesville\n\n*Only one day program/location per family \nFees: Free! \nFinal decisions for eligibility are determined by VHF\, HACA\, and CHT using Program Registration Guidelines. \nAll 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.  \nThank 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
URL:https://vahemophilia.org/event-program/5354/
LOCATION:Sandy Bottom Nature Park\, 1255 Big Bethel Road\, Hampton\, VA\, 23669
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20210805T190000
DTEND;TZID=America/New_York:20210805T200000
DTSTAMP:20260405T133001
CREATED:20210519T141738Z
LAST-MODIFIED:20210519T170752Z
UID:5344-1628190000-1628193600@vahemophilia.org
SUMMARY:Virtual Education Session - Gratitude Nation
DESCRIPTION:» RSVP Here \nTopic: Gratitude Nation \nFind out why practicing gratitude may be good for people living with a chronic condition and learn how to leverage gratitude in your own life. \nSpeaker: Xaviette Pointer-Kincy\, M.Ed\, Community Relations & Education Manager | Sanofi Genzyme \nThank you to our sponsor Sanofi Genzyme \n\nThis session is free and open to VHF constituents\, any constituent under the age of 12 will need adult supervision to participate. \nAs 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. \n  \n 
URL:https://vahemophilia.org/event-program/virtual-education-session-gratitude-nation/
LOCATION:Zoom
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20210731T100000
DTEND;TZID=America/New_York:20210731T140000
DTSTAMP:20260405T133001
CREATED:20210519T191402Z
LAST-MODIFIED:20210819T003016Z
UID:5348-1627725600-1627740000@vahemophilia.org
SUMMARY:VHF & HACA Pop-Up Day Program for Families
DESCRIPTION:» RSVP HERE \nPop-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. \nWE’RE TAKING CAMP ON THE ROAD! \nThis Summer we are working with Camp Holiday Trails to bring an in-person family camp day program to a park near you! \nWhat you can expect: \n\nA safe in-person event that will include protocols such as mask-wearing\, social distancing\, and using a family “pod” model\nCreative activity programming for the whole family\n\nAt least one parent and/or caregiver per family needs to be in attendance\nProgramming is geared toward ages 5-17. Ages 5 and under are welcome to attend\, but there will not be any childcare/supervision provided\n\n\nBoxed lunch and snacks during event\nCHT t-shirt and other swag!\n\nDates\, Times & Locations: \n\nSaturday\, July 31st\, 10:00 am – 2:00 pm – Location: Lake Fairfax Park\, Fairfax\nSaturday\, August 7th\, 10:00 am – 2:00 pm – Location: Sandy Bottom Nature Park\, Hampton\nSaturday\, August 14th\, 10:00 am – 2:00 pm – Location: Camp Holiday Trails\, Charlottesville\n\n*Only one day program/location per family \nFees: Free! \nFinal decisions for eligibility are determined by VHF\, HACA\, and CHT using Program Registration Guidelines. \nAll 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.  \nThank 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
URL:https://vahemophilia.org/event-program/vhf-haca-pop-up-day-camp-for-families/
LOCATION:Lake Fairfax Park\, 1400 Lake Fairfax Drive\, Reston\, VA\, 20190
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20210627T160000
DTEND;TZID=America/New_York:20210627T170000
DTSTAMP:20260405T133001
CREATED:20210511T174637Z
LAST-MODIFIED:20210512T174932Z
UID:5217-1624809600-1624813200@vahemophilia.org
SUMMARY:Community Event and Unite Walk Kick-Off
DESCRIPTION:»RSVP HERE \nJoin VHF for a highly interactive and engaging afternoon! \nIf 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! \nAll 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! \nThis 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. \nThank you to our community connection sponsors Accredo\, Hemophilia Federation of America and Takeda \n\nAs 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.
URL:https://vahemophilia.org/event-program/community-event-and-unite-walk-kick-off/
LOCATION:Zoom
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20210626T170000
DTEND;TZID=America/New_York:20210626T183000
DTSTAMP:20260405T133001
CREATED:20210512T154131Z
LAST-MODIFIED:20210709T144436Z
UID:5224-1624726800-1624732200@vahemophilia.org
SUMMARY:VHF Annual Meeting
DESCRIPTION:» RSVP HERE \nVHF’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. \n*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. \n» 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! \nWe could not provide this important event without the help of our generous sponsors.\nPremier Sponsors: Pfizer and Takeda\nPlatinum Sponsors: Accredo\, Bayer\, and Genentech\nCorporate 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 \n\nKeynote Presentation: “The right time helping\, changes a life.” Helping People with Bleeding Disorders in Developing Countries \nDescription: 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! \n\n		\n			\n				\n			\n			\n		 \n		\n			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.\n		\n			\n		\n\n		\n			\n				\n			\n			\n		 \n		\n			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.\n		\n			\n		\n\nAs 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.
URL:https://vahemophilia.org/event-program/vhf-annual-meeting/
LOCATION:Zoom
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20210527T190000
DTEND;TZID=America/New_York:20210527T200000
DTSTAMP:20260405T133001
CREATED:20210420T164415Z
LAST-MODIFIED:20210519T192805Z
UID:5186-1622142000-1622145600@vahemophilia.org
SUMMARY:Advocacy Chat with Delegate Kathleen Murphy
DESCRIPTION:» RSVP HERE \nJoin 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. \nThank you to our advocacy chat sponsors National Hemophilia Foundation (NHF) and Takeda \nRead 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.  \n  \n\n\nAs 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.
URL:https://vahemophilia.org/event-program/advocacy-chat-with-delegate-kathleen-murphy/
LOCATION:Zoom
CATEGORIES:advocacy,education,virtual chat
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20210516T160000
DTEND;TZID=America/New_York:20210516T173000
DTSTAMP:20260405T133001
CREATED:20210330T151758Z
LAST-MODIFIED:20210517T233106Z
UID:5153-1621180800-1621186200@vahemophilia.org
SUMMARY:Virtual Women's Retreat
DESCRIPTION:» RSVP HERE \nA 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). \nEducation 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. \nCraft 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. \nThank you to our retreat sponsors: BioMatrix\, CSL Behring\, Genentech\, and Takeda \n\nRead 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.  \n\nAs 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.
URL:https://vahemophilia.org/event-program/virtual-womens-retreat/
LOCATION:Zoom
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20210417T150000
DTEND;TZID=America/New_York:20210417T173000
DTSTAMP:20260405T133001
CREATED:20210304T184352Z
LAST-MODIFIED:20210412T173259Z
UID:5010-1618671600-1618680600@vahemophilia.org
SUMMARY:Medical Symposium
DESCRIPTION:»RSVP HERE\nThe 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. \n» 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! \nWhen 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. \nVHF 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. \nWe could not provide this important event without the help of our generous sponsors. \nPresenter Sponsors: Bayer\, BioMarin\, Genentech\, Sanofi Genzyme\, Spark Therapeutics\, and Takeda\nCorporate Sponsors: CSL Behring\, DrugCo Health\, Pfizer\, and Novo Nordisk \n\nMedical Symposium: Saturday\, April 17th from 3:00 – 5:30 pm\nTopic: Insurance Coverage: Opportunities Today and Challenges for Tomorrow\nPresenters: Kollet Koulianos\, MBA\, Senior Director Payer Relations at National Hemophilia Foundation and Miriam Goldstein\, Director of Policy at Hemophilia Federation of America \nHealth 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. \nTopic: World Hemophilia Day Spotlight\nPresenter: Roddy Doucet\, Philanthropy Manager\, Community Outreach at World Federation of Hemophilia \nTopic: Update on National Hemophilia Foundation’s (NHF’s) Plans and Future Directions for the Bleeding Disorders Community\nPresenter: Leonard Valentino\, MD\, President and Chief Executive Officer at NHF \nJoin 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! \n\nPresenter Sponsors Education Sessions: April 15th – April 30th\nDate: Thursday\, April 15th at 7:00 pm\nSponsor: Genentech\nPresenters: Maya Bloomberg\, ARNP\, MSN University of Miami Hemophilia Treatment Center and Louis\, a HEMLIBRA Ambassador\nTopic: Give it a Shot: A Different Type of Hemophilia A Therapy\nDescription: Join us for an educational session on HEMLIBRA \nDate: Friday\, April 16th at Noon\nSponsor: Bayer\nPresenter: Maya Bloomberg\, ARNP\, MSN University of Miami Hemophilia Treatment Center\nTopic: Meet Jivi\nDescription: 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? \nDate: Thursday\, April 22nd at 7:00 pm\nSponsor: Takeda\nPresenter: Betsy Koval BSN RN\, Senior Clinical Specialist with Takeda\nTopic: VWiD\nDescription: 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. \nDate: Friday\, April 23rd at Noon\nSponsor: Sanofi Genzyme\nPresenters: CoRe Manager\, Xaviette Pointer-Kincy and Physical Therapist\, Jeff Kallberg\nTopic: You Count On Your Joints More Than You Think\nDescription: 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. \nDate: Thursday\, April 29th at 7:00 pm\nSponsor: BioMarin\nPresenter: Dr. Guy Young\, HTC Director\, Children’s Hospital Los Angeles\nTopic: Drug Discovery & Beyond\nDescription: How scientists and the FDA research and evaluate new treatment options for you. \nDate: Friday\, April 30th at Noon\nSponsor: Spark Therapeutics\nPresenter: Laureen Temple\, Patient Education Lead\, Spark Therapeutics\nTopic: Understanding Gene Therapy Research and Its Potential Application to Hemophilia\nDescription: 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. \n\n					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.
URL:https://vahemophilia.org/event-program/medical-symposium/
LOCATION:Zoom
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20210408T190000
DTEND;TZID=America/New_York:20210408T200000
DTSTAMP:20260405T133001
CREATED:20210317T161809Z
LAST-MODIFIED:20210317T162647Z
UID:5116-1617908400-1617912000@vahemophilia.org
SUMMARY:VHF/HACA Men's Rap Session
DESCRIPTION:» RSVP Here \nIn 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. \nThese 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. \nThank you to our sponsor Hemophilia Federation of America (HFA). \nRead 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.  \n\nAs 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.
URL:https://vahemophilia.org/event-program/vhf-haca-mens-rap-session/
LOCATION:Zoom
ATTACH;FMTTYPE=image/jpeg:https://vahemophilia.org/wp-content/uploads/2020/09/49071881157_a9be747366_o.jpg
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20210325T190000
DTEND;TZID=America/New_York:20210325T203000
DTSTAMP:20260405T133001
CREATED:20210305T020853Z
LAST-MODIFIED:20210305T175729Z
UID:5021-1616698800-1616704200@vahemophilia.org
SUMMARY:CAMERA ON! Healing and the Art of Photography
DESCRIPTION:» RSVP HERE \nCAMERA ON! Healing and the Art of Photography \nIf 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! \nParticipants 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. \nThis 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)! \nThank you to our program sponsor BioMatrix. \n\n					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.
URL:https://vahemophilia.org/event-program/camera-on-healing-and-the-art-of-photography/
LOCATION:Zoom
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20210314T160000
DTEND;TZID=America/New_York:20210314T173000
DTSTAMP:20260405T133001
CREATED:20210217T005638Z
LAST-MODIFIED:20210301T202244Z
UID:4998-1615737600-1615743000@vahemophilia.org
SUMMARY:Virtual Community Connection - All Out Break-Out Games!
DESCRIPTION:» RSVP Here \nJoin 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! \nAll 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)! \nThis session is free and open to VHF constituents\, any constituent under the age of 12 will need adult supervision to participate. \n\nThis 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. \nAnne 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. \nMichael 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. \nThank you to our community connection sponsors CSL Behring\, Genentech\, Hemophilia Federation of America\, Pfizer\, and Takeda \n\nAs 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.
URL:https://vahemophilia.org/event-program/all-out-break-out-games/
LOCATION:Zoom
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20210303T190000
DTEND;TZID=America/New_York:20210303T200000
DTSTAMP:20260405T133001
CREATED:20210203T180250Z
LAST-MODIFIED:20210308T164726Z
UID:4922-1614798000-1614801600@vahemophilia.org
SUMMARY:New Family Education and Support
DESCRIPTION:» RSVP Here \nJoin 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. \nThis program is for families with children who have been diagnosed with an inherited bleeding disorder in the last 7 years. \nThank you to our program sponsors Accredo\, Genentech\, Hemophilia Federation of America\, and Takeda. \n\nAs 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.
URL:https://vahemophilia.org/event-program/first-step-virtual-program-for-new-families-2/
LOCATION:Zoom
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20210225T190000
DTEND;TZID=America/New_York:20210225T200000
DTSTAMP:20260405T133001
CREATED:20210111T170904Z
LAST-MODIFIED:20210204T163626Z
UID:4890-1614279600-1614283200@vahemophilia.org
SUMMARY:Virtual Community Connection - Board and Brush Activity
DESCRIPTION:RSVP IS CLOSED – THIS EVENT IS NOW FULL \nJoin 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! \nBroad & 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. \n\n3 participants max per household and each participant will need to be registered by February 11th\nThis 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.\n\nTurning 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. \nSince 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. \nThank you to our community connection sponsor CSL Behring! \n\nAs 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.
URL:https://vahemophilia.org/event-program/virtual-community-connection-board-and-brush-activity/
LOCATION:Zoom
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20210223T163000
DTEND;TZID=America/New_York:20210223T170000
DTSTAMP:20260405T133001
CREATED:20210113T171612Z
LAST-MODIFIED:20210217T012902Z
UID:4901-1614097800-1614099600@vahemophilia.org
SUMMARY:HACA/VHF General Assembly Weekly Check-In
DESCRIPTION:» Go here to register \nJoin 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. \n2021 General Assembly Session Dates: January 13th – February 11th – 2021 \nWhen you register you will receive an email with a re-occurring zoom link that you can use for all of the weekly check-ins. \nTuesdays at 4:30 pm (EST): \n\nJanuary 26\nFebruary 2\nFebruary 9\nFebruary 16\nFebruary 23\n\n\nThis session is free and open to VHF constituents\, any constituent under the age of 12 will need adult supervision to participate. \nAs 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.
URL:https://vahemophilia.org/event-program/vhf-haca-advocacy-committee-general-assembly-weekly-check-in/
LOCATION:Zoom
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20210218T190000
DTEND;TZID=America/New_York:20210218T200000
DTSTAMP:20260405T133001
CREATED:20210202T195713Z
LAST-MODIFIED:20210203T185929Z
UID:4920-1613674800-1613678400@vahemophilia.org
SUMMARY:VHF/HACA Virtual Men's Rap Session - Winter 2021
DESCRIPTION:» RSVP Here \nIn partnership with the Hemophilia Association of the Capital Area (HACA)\, we are offering a virtual Men’s Rap Session on a quarterly basis! \nParticipants 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. \nThank you to our sponsor Hemophilia Federation of America (HFA). \n\nAs 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.
URL:https://vahemophilia.org/event-program/vhf-haca-virtual-mens-rap-session-winter-2021/
LOCATION:Zoom
ATTACH;FMTTYPE=image/jpeg:https://vahemophilia.org/wp-content/uploads/2020/09/49071881157_a9be747366_o.jpg
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20210131T160000
DTEND;TZID=America/New_York:20210131T170000
DTSTAMP:20260405T133001
CREATED:20210108T142413Z
LAST-MODIFIED:20210127T224954Z
UID:4887-1612108800-1612112400@vahemophilia.org
SUMMARY:HACA/VHF Teen Task Force Advocacy Program
DESCRIPTION:» Go here to RSVP \nJoin 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. \nThis 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. \nAll 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. \nThank you to our sponsors Genentech\, Pfizer\, and Takeda \nFor questions contact:  \nPatti Williford\nHemophilia Association of the Capital Area (HACA)\n703-352-7641\nadmin@hacacares.org \n 
URL:https://vahemophilia.org/event-program/haca-vhf-teen-advocacy-program/
LOCATION:Zoom
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20210128T190000
DTEND;TZID=America/New_York:20210128T200000
DTSTAMP:20260405T133001
CREATED:20201216T190432Z
LAST-MODIFIED:20210120T182108Z
UID:4804-1611860400-1611864000@vahemophilia.org
SUMMARY:Virtual Education Session - What to do in a Hemophilia Emergency
DESCRIPTION:» RSVP HERE \n\nAll 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)! \nTopic: What to do in a Hemophilia Emergency \nAn interactive presentation which outlines preparation for an emergency as well as how to advocate for you or your loved one with Hemophilia. \nSpeaker: Linda Peacock\, RN\,BSN\,MBA | Bayer Healthcare Pharmaceuticals\, Hematology Nurse Educator-East \nThank you to our sponsor Bayer \n\nThis session is free and open to VHF constituents\, any constituent under the age of 12 will need adult supervision to participate. \nAs 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.
URL:https://vahemophilia.org/event-program/virtual-education-session-what-to-do-in-a-hemophilia-emergency/
LOCATION:Zoom
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
END:VCALENDAR