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X-WR-CALDESC:Events for Virginia Bleeding Disorders Foundation
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DTSTART;TZID=UTC:20220818T183000
DTEND;TZID=UTC:20220818T193000
DTSTAMP:20260407T093413
CREATED:20220801T144457Z
LAST-MODIFIED:20220801T151114Z
UID:6092-1660847400-1660851000@vahemophilia.org
SUMMARY:Education + Connection "Laughing Through Stress"
DESCRIPTION:RSVP HERE\n \nJoin us for an educational program for VHF constituents (and their immediate family and/or household members only). Dinner will be provided and there is no fee to attend. \nThe presentation theme will be: Laughing Through Stress \nSpeaker: Lori K.\, CSL Behring Common Factors Advocate and Caregiver to 3 sons and 1 granddaughter with hemophilia \nLori K. Bio: When our first child\, Jeff\, was born\, the umbilical cord was wrapped around his neck and his delivery was traumatic for both of us. Then Jeff’s newborn heel prick wouldn’t stop bleeding and his head began to swell. He was whisked out of my arms to a neonatal ICU unit in another hospital. Three days later doctors diagnosed him with severe hemophilia A. My husband and I were shocked—we didn’t even know what hemophilia was! Thankfully\, we were immediately introduced to the expertise and support of a hemophilia treatment center and the bleeding disorder community. Refusing to let hemophilia consume us\, we stashed it in the back seat and fulfilled our dream of having three children\, all of whom just happen to need a little extra help with blood clotting. \nToday our three sons are happy\, successful adults with lives of their own. Now I enjoy spending time with my grandchildren\, including my granddaughter who was also diagnosed with hemophilia A. \nSpace is limited and priority will be given to those members that live in the South West Virginia Region. \n\nThank you to our sponsor CSL Behring.
URL:https://vahemophilia.org/event-program/education-connection-laughing-through-stress/
LOCATION:Montano’s Restaurant\, 3733 Franklin Rd SW\, Roanoke\, VA\, 24014\, United States
CATEGORIES:community,education
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220813T100000
DTEND;TZID=America/New_York:20220813T120000
DTSTAMP:20260407T093413
CREATED:20220518T191313Z
LAST-MODIFIED:20220813T010629Z
UID:6035-1660384800-1660392000@vahemophilia.org
SUMMARY:Community Picnic - Deep Run Park
DESCRIPTION:RSVP HERE\nCome Celebrate Summer with your bleeding disorders community! Join us for a fun filled educational picnic\, community building and try out recreational tree climbing – a one-of-a-kind adventure for you and your family! \nEducation Session: Adapting Physical Activities for Joint Health \nThis session discusses the importance of physical activity and introduces ways to adapt activities to participant’s individual physical condition. This session includes exercise demonstrations.  \nPresenter: Marc Gilgannon\, PT \nWhat to expect if you choose to try tree climbing: Experience trees from a whole new perspective! Participants will ascend into the tree canopy using arborist-style rope climbing systems. They will wear helmets\, and be harnessed in and on belay by an instructor while climbing. Climbing is always challenge-by-choice: participants can decide to come down at any point. Recommendations on what to wear/bring: gloves – well fitted gardening-style with a rubberized palm (helps grip the rope)\, closed-toe shoes (high top preferred)\, long pants or longer shorts\, (short-shorts will be uncomfortable with the harness). » Go here to learn more about Riverside Outfitters and Recreational Tree Climbing \nEvent is limited to VHF constituents (and their immediate family and/or household members only). There is no fee to attend. \nThank you to our sponsors: Accredo\, BioMatrix\, CSL Behring\, Takeda\, Genentech\, Hemophilia Federation of America (HFA)\, and Hoos at Home \n\n» RSVP HERE
URL:https://vahemophilia.org/event-program/community-event-richmond-save-the-date/
LOCATION:Deep Run Park\, 9900 Ridgefield Pkwy\, Richmond\, VA\, 23233
CATEGORIES:community
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220731T100000
DTEND;TZID=America/New_York:20220731T120000
DTSTAMP:20260407T093413
CREATED:20220518T190444Z
LAST-MODIFIED:20220705T140355Z
UID:6032-1659261600-1659268800@vahemophilia.org
SUMMARY:Community Event - Little Island Park
DESCRIPTION:RSVP HERE\nCome Celebrate Summer with your bleeding disorders community! Join us for a fun filled educational picnic for individuals with inherited bleeding disorders and their immediate family and/or household members at Little Island Park – a 144-acre beach park in Sandbridge\, just north of Back Bay Wildlife Refuge. \nWe have reserved a covered shelter for the day and highlights include: a picnic style lunch\, a playground for the kids\, games\, education\, networking with new and old friends\, and plenty of time to enjoy the beach (the beach access leads right up to the reserved shelter). \nLittle Island Park: The park has a 775-foot beach north of the 400-foot fishing pier for surfing and a 2\,000-foot beach for swimming and fishing south of the pier. Back Bay\, a brackish lake\, provides excellent fishing and crabbing along the western border of this unique park. Park highlights: Picnic Area with Charcoal Grills\, Tennis Courts\, Basketball Courts\, Volleyball Court and Beach Volleyball\, Playground\, Canoe/Kayak Launch Area on Back Bay\, Public Restrooms\, Seasonal Rental Items: kayaks\, paddleboards and fishing poles\, Seasonal Concessions\, Vending Machines\, and Beach Wheelchairs – Three beach wheelchairs are available on a first come\, first served basis. Please visit the park office to check one out with a driver license or photo ID. \nEvent is limited to VHF constituents (and their immediate family and/or household members only). There is no fee to attend. \nThank you to our sponsors: Bayer\, BioMatrix\, Genentech and Takeda \n\n» RSVP here by July 15th
URL:https://vahemophilia.org/event-program/community-event-little-island-park/
LOCATION:Little Island Park\, 3820 S Sandpiper Rd\, Virginia Beach\, VA\, 23456
CATEGORIES:community
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220716T090000
DTEND;TZID=America/New_York:20220716T160000
DTSTAMP:20260407T093413
CREATED:20220131T193021Z
LAST-MODIFIED:20220614T190244Z
UID:5913-1657962000-1657987200@vahemophilia.org
SUMMARY:VHF/HACA Family Day Camp at Camp Holiday Trails
DESCRIPTION:REGISTER HERE\n  \nREGISTRATION IS NOW CLOSED – email heather@vahemophilia.org if you would like to be placed on the waiting list. \nJoin the Virginia Hemophilia Foundation (VHF) & the Hemophilia Association of the Capital Area (HACA) for Family Day Camp\, a day of fun camp activities at Camp Holiday Trails (CHT) in Charlottesville\, VA.  \nThe event will include arts and crafts; canoeing and kayaking; archery; the challenge course\, which features ziplining and rock wall climbing; and traditional camp songs. This program is designed for families with children who are between the ages of 5 – 17\, whose children are camp ready and/or are looking to attend camp in the next two years. Eligible families are those impacted by an inherited bleeding disorder who live in the territorial jurisdiction of VHF & HACA (this event is for VHF/HACA constituents and their immediate family and/or household members only.) » Go here to read Family Camp Guidelines \nLodging: Available for attendees on Friday\, July 15th and/or Saturday\, July 16th at the Sleep Inn and Suites Monticello. \nProgramming: On Saturday\, July 16th Family Day Camp will begin at CHT at 9:00 am and run through 4:00 pm and then that evening in Charlottesville you will not want to miss the Educational Dinner – “Gene Therapy Jeopardy” presented by BioMarin (restaurant TBD.) *Educational dinner is optional and is not a part of the Family Day Camp at CHT. There is no programming on Sunday. \nAcceptance to Family Day Camp: Prospective participants must complete the application by Friday\, May 13 (this is not a guarantee of participation). VHF and HACA staff will reach out via email to offer you a spot. Once you have been offered a spot you will need to provide your Covid-19 vaccination card and pay your $25 registration fee by Friday\, May 20th in order to secure your spot REGISTRATION IS NOW CLOSED \nCOVID-19 Vaccination Policy: CHT requires that all staff\, campers\, and volunteers will need to be fully vaccinated for COVID-19 as per the Centers for Disease Control (CDC) with no exemptions. All participants (children and adults) will need to provide proof of vaccination by providing a copy of their vaccination card at least 3 weeks prior to event (Friday\, June 24). Also\, additional mitigation efforts will be utilized: masks and social distancing when indoors\, sanitizing/cleaning on a regular basis along with ventilation and moving activities outside as much as possible to decrease the possibility of exposure to COVID-19. Please note that this policy is based on CDC guidelines and may change. For additional information or questions about the policy contact CHT directly at campisgood@campholidaytrails.org or 434-977-3781. \n\nThank you to our sponsors: CSL Behring\, CVS Health\, DrugCo Health\, Genentech\, Grifols\, Hoos at Home\, NovoNordisk\, Pfizer\, Sanofi Genzyme\, and Takeda
URL:https://vahemophilia.org/event-program/vhf-haca-family-camp-weekend-at-camp-holiday-trails/
LOCATION:Camp Holiday Trails\, 400 Holiday Trails Lane\, Charlottesville\, VA\, 22903
CATEGORIES:community,education
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220626T123000
DTEND;TZID=America/New_York:20220626T153000
DTSTAMP:20260407T093413
CREATED:20220404T201435Z
LAST-MODIFIED:20220509T234258Z
UID:5982-1656246600-1656257400@vahemophilia.org
SUMMARY:Community Event - Flying Squirrels Baseball Game
DESCRIPTION:RSVP HERE\n  \nVHF community events are social and educational gatherings that occur throughout the year. These events bring together the Virginia inherited bleeding disorders community and are an excellent opportunity for family fun\, networking\, support\, and increasing knowledge. \nEnjoy time catching up with your bleeding disorders community at the Flying Squirrels Baseball Game. We will start when the gates open at 12:30 pm with time for education and lunch in the picnic zone. The game will begin at 1:35 pm and we will have reserved seats as a group in an exclusive area down the third base line and adjacent to the picnic zone. \nPicnic Zone Buffet Menu: Hamburgers\, Hot Dogs\, BBQ Pulled Pork\, Grilled Chicken\, Mac and Cheese\, Coleslaw\, and Non-Alcoholic Drinks are included. \nEvent is limited to VHF constituents (and their immediate family and/or household members only). There is no fee to attend. \n\nThank you to our generous sponsors: Accredo\, Genentech\, Superior Biologics\, and Takeda
URL:https://vahemophilia.org/event-program/community-event-flying-squirrels-baseball-game/
LOCATION:The Diamond\, 3001 N. Arthur Ashe Blvd.\, Richmond\, VA\, 23230
CATEGORIES:community,education
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220625T090000
DTEND;TZID=America/New_York:20220625T160000
DTSTAMP:20260407T093413
CREATED:20220404T193252Z
LAST-MODIFIED:20220617T160253Z
UID:5979-1656147600-1656172800@vahemophilia.org
SUMMARY:Annual Meeting - Community Member Registration
DESCRIPTION:RSVP HERE\n  \nVHF’s Annual Meeting brings together the inherited bleeding disorder community to share information on a wide variety of topics and it is a great opportunity for networking and support for individuals and families. \n» Go here to view the meeting agenda \nAnnual Meeting Highlights and Sessions Include: Understanding all sides – Keys to effective grassroots advocacy on the state and federal level\, Looking from the Outside in: Musculoskeletal Ultrasound\, Strategies for Managing Child\, Adolescent\, and Caregiver Mental Health\, Aging as a Person with a Bleeding Disorder and more; Lyman Fisher Scholarship recognition; VHF chapter updates; and on-site children and teen programming with Camp Holiday Trails. \nSaturday\, June 25th | 10:00 am: Annual Meeting will begin (light refreshments starting at 9:00 am and meeting will conclude by 4:00 pm) \n\nYou Do Not Want To Miss our Community Event – Richmond Flying Squirrels Baseball Game on Sunday\, June 26th! » Go here to learn more and register *Community event is optional and is not a part of the annual meeting. \nOvernight accommodations at Virginia Crossings Hotel & Conference Center are available on Saturday\, June 25th. Educational programs\, scheduled meals\, community events\, and overnight accommodations are provided at no cost for constituents that live in the VHF coverage area. There is a $25 registration fee per household (after you register you will receive a link to pay your fee.) \nIf 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. \n\nThank you to our sponsors –  \nPremier Sponsors\nPfizer and Takeda \nPlatinum Sponsors\nAccredo\, Bayer\, CSL Behring\, Genentech\, HemaBiologics\, Octapharma\, Sanofi\, and Spark Therapeutics \nCorporate Sponsors\nBioMarin\, BioMatrix\, Children’s Hospital of The King’s Daughter’s (CHKD) and the University of Virginia’s (UVA) 340B Factor Program\, CVS Specialty Pharmacy\, DrugCo Health\, NovoNordisk\, and Optum \nFriends – National Hemophilia Foundation (NHF)
URL:https://vahemophilia.org/event-program/annual-meeting-community-member-registration-2/
LOCATION:Virginia Crossings Hotel\, Tapestry Collection by Hilton\, 1000 Virginia Center Pkwy\, Glen Allen\, VA\, 23059\, United States
CATEGORIES:advocacy,community,education
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220521T110000
DTEND;TZID=America/New_York:20220521T130000
DTSTAMP:20260407T093413
CREATED:20220401T203709Z
LAST-MODIFIED:20220413T175804Z
UID:5976-1653130800-1653138000@vahemophilia.org
SUMMARY:Community Event - Luray Caverns Rope Adventure Park
DESCRIPTION:RSVP HERE\n  \nVHF community events are social and educational gatherings that occur throughout the year. These events bring together the Virginia inherited bleeding disorders community and are an excellent opportunity for family fun\, networking\, support\, and increasing knowledge. \nGet active with your bleeding disorders community at the Luray Caverns Rope Adventure Park. This fun physical activity enables participants to grow at an individual or team level\, exploring risk\, self-discovery\, communication\, and problem-solving all on different levels of ropes course challenges! \nEvent is limited to VHF constituents (and their immediate family and/or household members only). There is no fee to attend and lunch will be provided. \n\nThank you to our generous sponsors: Genentech and Takeda
URL:https://vahemophilia.org/event-program/community-event-at-luray-caverns-rope-adventure-park/
LOCATION:Luray Caverns Rope Adventure Park\, 970 US-211\, Luray\, Virginia\, 22835\, United States
CATEGORIES:community,education
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220514T103000
DTEND;TZID=America/New_York:20220514T130000
DTSTAMP:20260407T093413
CREATED:20220401T194756Z
LAST-MODIFIED:20220511T190057Z
UID:5973-1652524200-1652533200@vahemophilia.org
SUMMARY:Women's Day Out
DESCRIPTION:RSVP HERE\n  \nA rejuvenating day filled with educational programming and community building. This day out is open to VHF constituents who are women age 21 and up with inherited bleeding disorders/carriers and/or to women whose lives are impacted by a bleeding disorder (i.e. caregivers\, spouses\, immediate family members). \nJoin VHF at The Loft at Saude Creek Vineyards where you will learn how to design your own plant terrarium while visiting with fellow members at this fun and crafty workshop\, led by Abby Curry of CurryKreates! There is no charge for this event and it will include 3 plants\, decorations\, and a glass container to build your own terrarium. Additional Plants/Décor can be purchased on site. Refreshments will be provided. \n\nThank you to our women’s day out sponsors: CSL Behring\, Genentech and Takeda
URL:https://vahemophilia.org/event-program/womens-day-out/
LOCATION:Saude Creek Vineyards\, 16230 Cooks Mill Rd\, Lanexa\, 23089\, United States
CATEGORIES:community,education
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220504T190000
DTEND;TZID=America/New_York:20220504T200000
DTSTAMP:20260407T093413
CREATED:20220330T181619Z
LAST-MODIFIED:20220504T185820Z
UID:5967-1651690800-1651694400@vahemophilia.org
SUMMARY:Virtual Education & Support "Mind-Body-Heart Connection"
DESCRIPTION:RSVP HERE\n  \nThe mind\, body and heart connection plays an integral role in our overall health and well-being and we wanted to honor this connection during “Mental Health Awareness” month\, which is celebrated each May. So join VHF for a virtual education presentation in partnership with Hemophilia Federation of America (HFA) with Gary McClain\, PhD. This program is free and open to VHF constituents. \nTopic: Mind-Body-Heart Connection \nThis session concentrates on supporting attendees to create a more balanced life and empowers attendees to take control of their health\, body\, and mind for a healthy lifestyle. \nPresenter: Gary McClain\, PhD \nDr. McClain is a recognized expert in understanding the emotional reactions to medical diagnosis. He has written for numerous publications and writes a regular column on mental health issues for HIV Plus Magazine. He maintains the website\, www.JustGotDiagnosed.com\, that is filled with resources for individuals recently diagnosed with chronic and catastrophic medical conditions\, their caregivers\, and loved ones. \nThis education program is presented in partnership with 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/virtual-education-support-mind-body-heart-connection/
LOCATION:Online
CATEGORIES:community,education,virtual
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220428T183000
DTEND;TZID=America/New_York:20220428T193000
DTSTAMP:20260407T093413
CREATED:20220330T175627Z
LAST-MODIFIED:20220413T173936Z
UID:5965-1651170600-1651174200@vahemophilia.org
SUMMARY:Education + Connection "Gratitude Nation"
DESCRIPTION:THIS PROGRAM IS FULL *If you would like to be added to the waitlist please email heather@vahemophilia.org\n  \nJoin us for an educational program for VHF constituents (and their immediate family and/or household members only). Dinner will be provided and there is no fee to attend. \nThe topic will be: 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 \nSpace is limited and priority will be given to those members that live in the Tidewater Region. \n\nThank you to our sponsor Sanofi Genzyme.
URL:https://vahemophilia.org/event-program/education-connection-gratitude-nation/
LOCATION:Steinhilber’s\, 653 Thalia Rd\, \, VA\, Virginia Beach\, VA\, 23452\, United States
CATEGORIES:community,education
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20220313T160000
DTEND;TZID=America/New_York:20220313T170000
DTSTAMP:20260407T093413
CREATED:20220119T200206Z
LAST-MODIFIED:20220310T152627Z
UID:5907-1647187200-1647190800@vahemophilia.org
SUMMARY:Ages and Stages: Early Childhood
DESCRIPTION:RSVP HERE\n \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 ages 0-10 with community connection and education. This program is free and open to VHF constituents. \nTopic: Ages and Stages: Early Childhood (Ages 0-10) \nThis virtual session will help parents better understand what they can expect behaviorally and emotionally throughout the early years of childhood. Child development\, temperament\, common mood and behavior problems and parenting strategies will be discussed. The session will include some bleeding disorder specific information\, for example\, when a child can start to self-infuse from a behavioral standpoint not a medical standpoint\, how (hemophilia) treatments progress with age\, and the prevalence of anxiety and other behavioral challenges among children with bleeding disorders.  \nPresenter: Juliana S. Bloom\, Ph.D.\, Pediatric Neuropsychologist at The Levin Center \n		\n			\n				\n			\n			\n		 \n		\n			Juliana S. Bloom\, Ph.D. is a licensed psychologist and pediatric neuropsychologist based in Orlando\, Florida. Dr. Bloom currently provides assessment\, therapy\, and consultation services. Dr. Bloom received her B.A. summa cum laude from Emory University and her Masters of Education and doctoral degrees from the University of Georgia. While at UGA\, she conducted clinical research on the neurobiological basis of dyslexia and ADHD. Dr. Bloom completed her internship and postdoctoral fellowship at the Children’s Hospital of Philadelphia\, where she worked with children and adolescents with complex medical and neurological illnesses\, including stroke\, epilepsy\, brain tumors\, cancer\, and traumatic brain injury\, among others. Dr. Bloom’s areas of clinical interest include dyslexia\, ADHD\, neuropsychological outcome and school re-entry following acquired brain injury and medical illness\, medical traumatic stress in patients and families\, and pediatric stroke. She is the author of seven peer reviewed journal articles\, five invited book chapters\, and more than 40 conference presentations. She is a member of the American Psychological Association and the International Neuropsychological Society. She loves spending her free time with her husband and two children.\n		\n			\n		 \nThis education program is presented in partnership with Hemophilia Federation of America (HFA). \nThank you to our New Family Education and Support Sponsors 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.
URL:https://vahemophilia.org/event-program/new-family-education-and-support-ages-and-stages-early-childhood/
LOCATION:Zoom
CATEGORIES:community,education,New Families,virtual
ORGANIZER;CN="Heather Conner%2C VHF Interim Director":MAILTO:heather@vahemophilia.org
END:VEVENT
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