BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//VHL Alliance - ECPv6.13.2.1//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-WR-CALNAME:VHL Alliance
X-ORIGINAL-URL:https://vhl.org
X-WR-CALDESC:Events for VHL Alliance
REFRESH-INTERVAL;VALUE=DURATION:PT1H
X-Robots-Tag:noindex
X-PUBLISHED-TTL:PT1H
BEGIN:VTIMEZONE
TZID:America/New_York
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20250309T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20251102T060000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250801
DTEND;VALUE=DATE:20250804
DTSTAMP:20260405T192400
CREATED:20241028T172715Z
LAST-MODIFIED:20250721T164225Z
UID:10000104-1754006400-1754265599@vhl.org
SUMMARY:Family Weekend 2025 | Ann Arbor\, Michigan
DESCRIPTION:Can you join us for VHL Family Weekend 2025? \n  \nWhen: August 1-3\, 2025 \nWhere: University of Michigan\, Ann Arbor\, MI \n  \nThe VHL Alliance invites you to join us for our annual Family Weekend\, a unique opportunity to connect with the VHL community\, hear from leading experts\, and share experiences with others impacted by von Hippel-Lindau (VHL) disease. This year\, we’re thrilled to partner with the University of Michigan to host the event in beautiful Ann Arbor. \n  \nWhat to Expect: \n\nEducational Sessions: Learn the latest in VHL research\, treatments\, and patient care from top medical professionals.\nCommunity Building: Meet and bond with families with lived experience and supporters of the VHL community\nInteractive Workshops: Participate in hands-on activities and discussions tailored to help navigate the challenges of living with VHL.\nKid-Friendly Activities: Fun\, supervised programs for children\, making this event enjoyable for all ages.\n\n  \nWho Should Attend: \n\nIndividuals and families living with VHL\nMedical professionals and researchers\nCaregivers\, advocates\, and supporters\n\n  \nWhether this is your first Family Weekend or you join us every year\, Family Weekend always promises to inspire\, inform\, and connect. Come be part of a supportive community that understands the unique challenges of living with VHL. \n  \nTickets are available for only $50 – Click here to secure your spot! \n  \n\nPlease note that we require a registration for every person who plans to attend Family Weekend\nYour ticket price includes a welcome dinner on Friday night and additional activities throughout the weekend!\n\n  \nFRIDAY \nCheck in at The Graduate\, 615 E. Huron St\, Ann Arbor\, MI 48104 (855-605-0316) \nWhen checking in\, please look for us in the hotel lobby. We’ll have a general schedule for you\, as well as your name badge for the weekend.  \n  \n“The Big House” Tour  \nTransportation to the UM Stadium will leave promptly from the hotel lobby at 4:30 PM.  The tour is approximately 1-1.5 hours long. Transportation to the stadium\, and onto the Welcome Tailgate will be provided. If you are staying at a different location\, are a local\, or prefer to use your own transportation\, please meet at the Jack Roth Stadium Club Entrance on the east side of the Stadium just north of Crisler Center. Please Note: The tour is at capacity so only those who confirmed their attendance will be admitted on the tour.  \n  \n6:30 PM Welcome Dinner Tailgate: BURNS PARK 1300 Baldwin Ave\, Ann Arbor\, MI 48104 (enter at the corner of Wells and Baldwin) \nTailgating fun begins at 6:30 PM. Traditional BBQ fixings\, and other snacks\, will kick off an evening of fun and community. If you attend the tour\, transportation to Burns Park will be provided.  \n**If you are not attending the tour\, but are attending the Welcome Tailgate\, pick-up will be at 6:10 outside The Graduate lobby.  Transportation will be provided to The Graduate at the conclusion of the event.** \n  \nSATURDAY \n8:30 AM University of Michigan: Palmer Commons 100 Washtenaw Ave\, Ann Arbor\, MI 48109\,  Great Lakes Room 4th Fl \n  \nTransportation will not be provided from The Graduate to the UM\, as it is within walking distance. However\, those who have noted mobility exceptions will be driven to Palmer Commons by staff\, and we will depart promptly at 8:15 AM.   \n  \nParking is available in the Palmer Drive Parking Structure. Parking vouchers will be provided.  \nA light breakfast will be provided from 8:30\, with presentations beginning at 9 AM. Youth will depart for their day of fun at approximately 9:45. (Please see below for detailed information on their schedule).  Please be aware that there will be photography\, video\, and seminar recording throughout the day. Presentations will conclude at 3:30 PM \n  \nKids programming\, Chaperoned by UM Genetic Counseling Program Volunteers; departing Palmer Commons at 9:45 AM \nKids 10 and under: \n10:00 Hands-On Museum of Ann Arbor\n12:15 Lunch\n12:45 University of Michigan Museum of Natural History\n1 PM Planetarium-The Sky Tonight\n2 PM (Optional) T-Rex\n3:30 Return to Palmer Commons \n  \nTeens:\n10:00 Launch Family Entertainment\n12:15 Lunch\n1:00 University of Michigan Museum of Natural History\n1 PM Planetarium-The Sky Tonight\n2 PM (Optional) T-Rex\n3:30 Return to Palmer Commons \n  \nSUNDAY \n9 AM The Graduate\, 615 E Huron\, Ann Arbor\, MI 48109 \n  \nThe day will begin with an optional 7:30 Yoga class on the terrace\, followed by the Community Breakfast at 9 AM.  We have a great lineup of speakers and sessions for the final morning of the event. We will conclude at Noon\, with a boxed lunch for your travels! \n  \nLodging: \nWe recommend staying at The Graduate hotel in Ann Arbor. \n  \n*Please note that we cannot guarantee that we can accommodate dietary requests received after July 7th* \n  \nMark your calendars\, and stay tuned for more details\, including the agenda and guest speakers. We can’t wait to see you there! \n  \nWant to attend VHL Family Weekend 2025 in Ann Arbor\, Michigan\, but worried about travel costs? We’re here to help! \nThe VHL Alliance is offering travel scholarships of up to $500 to help make this special weekend accessible to as many families as possible. Apply by June 12 to be considered. Click here to apply now! \n  \nPlease direct any questions about this event to info@vhl.org \n  \n      \n  \nThis event is brought to you with support from  \n  \n \n  \n \n  \n \n  \n \n 
URL:https://vhl.org/vhla-event/family-weekend-2025-ann-arbor-michigan/
CATEGORIES:In Person Event
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2024/10/Family-Weekend-2025-Promo-University-of-Michigan-3.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250804T200000
DTEND;TZID=America/New_York:20250804T210000
DTSTAMP:20260405T192400
CREATED:20250725T133633Z
LAST-MODIFIED:20250725T133633Z
UID:10000119-1754337600-1754341200@vhl.org
SUMMARY:August Patient/Caregiver Call
DESCRIPTION:First Monday of every month. \n  \nAll are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other VHL-related topics. We look forward to another thoughtful discussion! \n  \nThis facilitated call takes place on the first Monday of every month at 8 PM ET. \n  \nCall topic:\nBuilding a healthy support network – Managing isolation and building connections \n  \nIf you would like to join the call list please click here to register. \n 
URL:https://vhl.org/vhla-event/august-patient-caregiver-call-2025/
LOCATION:Zoom / Online
CATEGORIES:VHL Patient/Caregiver Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2025/07/aug-4-2025-building-a-healthy-support-network-scaled.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250813T193000
DTEND;TZID=America/New_York:20250813T203000
DTSTAMP:20260405T192400
CREATED:20250725T132152Z
LAST-MODIFIED:20250725T132152Z
UID:10000113-1755113400-1755117000@vhl.org
SUMMARY:August Low/No Vision Call
DESCRIPTION:Second Wednesday of every month. \n  \nLiving with low or no vision creates unique challenges for VHL patients. The Low/No Vision Monthly Discussion Call is specifically designed for support and sharing of important tips and resources. \n  \nOur call topic:\n \nTechniques\, hacks\, and shortcuts we’ve come up with to make every day tasks easier. \n  \nAll are welcome to join—whether you have questions or just want to find out more. There will be time near the end of the call for an open discussion of other related topics. We look forward to another thoughtful discussion! \n  \nThis facilitated call takes place on the 2nd Wednesday of every month at 7:30 PM ET. If you would like to join the call\, please fill out the form below. \n  \nIf you would like to join the call list please click here to register.
URL:https://vhl.org/vhla-event/aug-low-no-vision-call-2025/
LOCATION:Zoom / Online
CATEGORIES:Low/No Vision Monthly Call
ATTACH;FMTTYPE=image/jpeg:https://vhl.org/wp-content/uploads/2025/07/aug-13-2025-hacks-for-making-life-easier-scaled.jpg
END:VEVENT
END:VCALENDAR