BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//Association for the Bladder Exstrophy Community - ECPv6.15.20//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-WR-CALNAME:Association for the Bladder Exstrophy Community
X-ORIGINAL-URL:https://www.bladderexstrophy.com
X-WR-CALDESC:Events for Association for the Bladder Exstrophy Community
REFRESH-INTERVAL;VALUE=DURATION:PT1H
X-Robots-Tag:noindex
X-PUBLISHED-TTL:PT1H
BEGIN:VTIMEZONE
TZID:America/Halifax
BEGIN:DAYLIGHT
TZOFFSETFROM:-0400
TZOFFSETTO:-0300
TZNAME:ADT
DTSTART:20190310T060000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0300
TZOFFSETTO:-0400
TZNAME:AST
DTSTART:20191103T050000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0400
TZOFFSETTO:-0300
TZNAME:ADT
DTSTART:20200308T060000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0300
TZOFFSETTO:-0400
TZNAME:AST
DTSTART:20201101T050000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0400
TZOFFSETTO:-0300
TZNAME:ADT
DTSTART:20210314T060000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0300
TZOFFSETTO:-0400
TZNAME:AST
DTSTART:20211107T050000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0400
TZOFFSETTO:-0300
TZNAME:ADT
DTSTART:20220313T060000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0300
TZOFFSETTO:-0400
TZNAME:AST
DTSTART:20221106T050000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0400
TZOFFSETTO:-0300
TZNAME:ADT
DTSTART:20230312T060000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0300
TZOFFSETTO:-0400
TZNAME:AST
DTSTART:20231105T050000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0400
TZOFFSETTO:-0300
TZNAME:ADT
DTSTART:20240310T060000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0300
TZOFFSETTO:-0400
TZNAME:AST
DTSTART:20241103T050000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0400
TZOFFSETTO:-0300
TZNAME:ADT
DTSTART:20250309T060000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0300
TZOFFSETTO:-0400
TZNAME:AST
DTSTART:20251102T050000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:-0400
TZOFFSETTO:-0300
TZNAME:ADT
DTSTART:20260308T060000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0300
TZOFFSETTO:-0400
TZNAME:AST
DTSTART:20261101T050000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250725
DTEND;VALUE=DATE:20250728
DTSTAMP:20260515T060952
CREATED:20200213T160312Z
LAST-MODIFIED:20250522T201500Z
UID:4903-1753401600-1753660799@www.bladderexstrophy.com
SUMMARY:2025 Great Lakes Chapter 16th Annual Summer Campout
DESCRIPTION:You are invited to join us for a weekend campout for anyone with bladder exstrophy\, cloacal exstrophy\, cloaca\, epispadias and hypospadias\, and their families and friends. This is a great way to connect with other families\, share in similar experiences and know that you are not alone!  To view some videos about what our campouts are like\, visit the “Courage to Shine” website. \nLocation and Facilities\nEby’s Pines RV Park & Campground in Bristol\, Indiana\, is located in the scenic forests of northern Indiana’s Amish Country. It is just minutes from the Indiana Toll Road. Eby’s Pines has tent sites\, full hook-up sites\, pull-thru sites\, and cabins\, as well as two heated pools and a playground. Driving directions to Eby’s Pines may be found toward the bottom of this email. \nEby’s Pines Campground\n14583 State Road 120\nBristol\, IN  46507 \nPhone:  (574) 848-4583 \nActivities\nJoin us on Friday and Saturday evenings in the Shady Lane area of the campground as we gather around the campfire and enjoy s’mores. We have reserved the Island Pavilion all day Saturday\, where everyone is invited join us for a picnic lunch at 11:30am—we will provide hot dogs\, chips\, cookies\, and bottled water—followed by a group photo at 12:45pm.  The rest of the time will be unscheduled for swimming\, games\, crafts with kids\, and—most importantly—having fun with old friends and making new ones! \nCost of Participation\nThere is no registration cost for the campout!  You will need to pay for your campsite (at Eby’s Pines) or local hotel accommodations.  If staying at a hotel\, day passes are required to park at Eby’s Pines—for more details\, see Question #4 in the list of “FAQ” (see below). \nWhether you are camping at Eby’s Pines\, staying at a nearby hotel\, or visiting just for the picnic on Saturday\, July 28\, please contact Alice Ambrose to let her know the number of people coming with you.  You may call or text her at (616) 406-7857\, or e-mail her at bradnalice@charter.net. \nReservations\nTo make your campsite reservation\, please call Eby’s Pines at (574) 848-4583.  Please call 2 – 9 pm on Sundays OR 9 am – 9 pm on Mondays\, Tuesdays\, or Wednesdays.  Ask for Teresa\, who will be eager to help you!  Call Eby’s Pines as soon as possible\, especially if you prefer a specific site (for example\, in the Shady Lane area\, where Alice and Brad will be) or type of accommodation (such as a camping cabin). \nIf you are interested in coming but don’t want to camp\, there are several nice hotels within a short drive from Eby’s Pines.  The nearest hotel is Hampton Inn & Suites in Middlebury\, IN (phone (574) 822-0288).  Additional hotel information for Shipshewana\, IN\, can be found at:  http://www.Shipshewana.com \nFrequently Asked Questions about the GLC campout: \nQ1:  Who can attend the campout? \nA:     Anyone of any age\, adults and children\, living with bladder exstrophy\, cloacal exstrophy\, cloaca\, epispadias and hypospadias are invited to attend\, along with their immediate families\, extended families\, and friends!  Also\, you don’t need to live in a “Great Lakes” state.  (Campers have come from as nearby as Middlebury\, IN\, and as far away as Washington\, Massachusetts\, and Ontario\, Canada!)  Since our first campout in 2009 we have seen more and more families attend—ranging from 20 to 30 families—and the ages of those with exstrophy have ranged from toddler age to adults in our 50’s! \nQ2:  What is the typical schedule of events for the weekend of the campout? \nA:     On the evenings of Friday (July 25) and Saturday (July 26) we are planning a campfire at one of our group’s campsites along Shady Lane.  On Saturday\, from 9:00 am to 5:00 pm\, everyone is invited to the Island Pavilion for games\, crafts\, and conversation.  Starting at 11:30 am on Saturday\, join us at the Island Pavilion for a picnic lunch followed by a group photo at 12:45 pm.  Apart from these activities\, the rest of the time is unscheduled so that everyone can enjoy the campground facilities and nearby attractions as they so choose.  (Note:  You are welcome to arrive a day or two early and/or stay an extra day or two after the weekend\, as some families have done in the past.  That way\, the campout can be part of a longer vacation and you can visit even more with other families who do the same!) \nQ3:  What can we bring to the picnic lunch on Saturday? \nA:     Whatever you would like—but please don’t feel obliged to bring anything!  We will provide hot dogs (including skinless hot dogs and gluten-free buns)\, chips\, cookies\, and bottled water\, as well as plates\, plastic ware\, and napkins. \nQ4:  We are inexperienced and/or unexcited when it comes to camping\, whether in tents or RVs.  Must our family “camp out” to come to the campout? \nA:     That’s okay\, you do not need to camp to attend the campout!  Several nice hotels are located a short drive from Eby’s Pines.  Our recommendation is Hampton Inn & Suites in Middlebury\, IN (see above for details).  Unfortunately we cannot offer any camping equipment to borrow. \nIf you plan to stay in a local hotel\, please be aware that visitors to Eby’s Pines must register at the campground office upon arrival and obtain a day pass in order to use the pool\, playground\, and other campground facilities.  (Please call Eby’s Pines directly at 574-848-4583 for 2023 day pass fees.)  However\, if you plan to visit Eby’s Pines forjust Saturday\, July 29 then\, upon registering at the campground office\, tell the staff person you are joining the “Ambrose group” at the Island Pavilion.  Your Saturday day pass should then be free of charge. \nQ5:  Are there scholarships or other financial help available to cover travel costs for the campout? \nA:     Unfortunately not at this time.  The cost of the Saturday picnic lunch and renting the Island Pavilion for that day has been paid for out-of-pocket by the campout coordinators.  Over the past few years we (Alice and her husband Brad) had received donations (for example\, from doctors with whom Alice used to work) that helped offset some of these costs.  However\, we do not receive financial support from A-BE-C\, despite being affiliated with them. \nQ6:  I wish there were a campout closer to me! \nA:     There can be!  All that is needed is one person or family to serve as a point of contact\, select a date and site\, and get the word out. (Exstrophy-related Facebook groups have been great for free publicity!)  Alice has experience coordinating regional campouts both here and in Washington state\, so please feel free to contact her if you would like more details or suggestions on getting started! \n  \nThe Great Lakes Chapter of The A-BE-C is a regional network serving the Great Lakes states (MI\, MN\, WI\, IL\, IN\, NY\, PA\, and OH) as well as Ontario. Did you know… that there are support groups on Facebook for exstrophy patients and their families?  Please contact Alice Ambrose (email her at bradnalice@charter.net) to get connected.  There are specific private groups as well as a general group for exstrophy patients and families.
URL:https://www.bladderexstrophy.com/event/2025-great-lakes-chapter-16th-annual-summer-campout/
LOCATION:Eby’s Pines RV Park & Campground\, Bristol\, Indiana
CATEGORIES:Summer campout
ATTACH;FMTTYPE=image/png:https://www.bladderexstrophy.com/wp-content/uploads/2020/02/Screen-Shot-2014-12-18-at-11.00.29-AM-e1418929550674-1.png
ORGANIZER;CN="Alice & Brad Ambrose":MAILTO:bradnalice@charter.net
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220729
DTEND;VALUE=DATE:20220802
DTSTAMP:20260515T060952
CREATED:20220519T193112Z
LAST-MODIFIED:20220519T195259Z
UID:5712-1659052800-1659398399@www.bladderexstrophy.com
SUMMARY:B.E.S.T. Campout
DESCRIPTION:
URL:https://www.bladderexstrophy.com/event/b-e-s-t-campout/
LOCATION:Tahoe Valley Campground\, 1175 Melba Dr\, South Lake Tahoe\, CA\, 96150\, United States
CATEGORIES:Summer campout
ATTACH;FMTTYPE=image/png:https://www.bladderexstrophy.com/wp-content/uploads/2022/05/bold-best.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220713
DTEND;VALUE=DATE:20220717
DTSTAMP:20260515T060952
CREATED:20200504T192657Z
LAST-MODIFIED:20220519T194858Z
UID:5153-1657670400-1658015999@www.bladderexstrophy.com
SUMMARY:Youth Rally 2022 (Virtual)
DESCRIPTION:Youth Rally will be in a virtual setting again in 2022. While we’d much rather be on-site\, we’re excited to have the additional planning time in 2022. \n\n 
URL:https://www.bladderexstrophy.com/event/youth-rally/
LOCATION:CA\, United States
CATEGORIES:Summer campout
ATTACH;FMTTYPE=image/png:https://www.bladderexstrophy.com/wp-content/uploads/2015/04/LOGO-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220708
DTEND;VALUE=DATE:20220710
DTSTAMP:20260515T060952
CREATED:20200213T170804Z
LAST-MODIFIED:20220519T195005Z
UID:4909-1657238400-1657411199@www.bladderexstrophy.com
SUMMARY:2022 International Exstrophy Conference
DESCRIPTION:Proudly hosted in conjunction with Johns Hopkins
URL:https://www.bladderexstrophy.com/event/2022-international-exstrophy-conference/
LOCATION:Maritime Conference Center\, 692 Maritime Boulevard\, Linthicum Heights\, MD\, 21090\, United States
ATTACH;FMTTYPE=image/png:https://www.bladderexstrophy.com/wp-content/uploads/2022/03/Copy-of-POSTPONED-1.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210723
DTEND;VALUE=DATE:20210726
DTSTAMP:20260515T060952
CREATED:20200504T182946Z
LAST-MODIFIED:20200504T184213Z
UID:5152-1626998400-1627257599@www.bladderexstrophy.com
SUMMARY:2021 Great Lakes Chapter 12th Annual Summer Campout
DESCRIPTION:2020 EVENT HAS BEEN CANCELLED\nDue to the global pandemic\, the 2020 Great Lakes Exstrophy campout has been canceled. But we already have dates for our 2021 campout – Friday\, July 23 to Sunday\, July 25\, 2021. \nIf you made reservations at Eby’s Pines for the 2020 event\, you can transfer your reservation to the 2021 campout at no cost! Call the campground directly at (574) 848-4583 and speak with Teresa or Linda. \n\nDetails: \n\nYou are invited to join us for a weekend campout for anyone dealing with bladder exstrophy\, cloacal exstrophy\, epispadias and hypospadias and their families and friends. This is a great way to connect with other families\, share in similar experiences and know that you are not alone! \nDates: Friday\, July 23 to Sunday\, July 25 2021 \nLocation and Facilities:  Eby’s Pines RV Park & Campground (http://www.ebyspines.com) in Bristol\, Indiana is located in the scenic forests of northern Indiana’s Amish Country.  It is just minutes from the Indiana Toll Road. Eby’s Pines has tent sites\, full hook-up sites\, pull-thru sites\, and cabins\, as well as two heated pools and a playground. \nActivities:  Join us on Friday and Saturday evenings in the Shady Lane area of the campground as we gather around the campfire and enjoy s’mores.  We have reserved the Island Pavilion (a short walk from the swimming pools) all day Saturday.  That day at the Island Pavilion join us for a picnic lunch at 11:30am—we will provide hot dogs\, chips\, cookies\, and bottled water—followed by a group photo at 12:45pm.  The rest of the time will be unscheduled for swimming\, games\, crafts with kids\, exploring the Shipshewana area\, and—most importantly—having fun with old friends and making new ones! \nReservations:  Eby’s Pines is now accepting reservations for campsites for our 2021 campout.  Please call Eby’s Pines as soon as possible\, especially if you have preference for a site (e.g.\, in the Shady Lane area\, where Alice and Brad will be) or type of accommodation (e.g.\, a rustic camping cabin).  To make your reservation\, call Eby’s Pines at (574) 848-4583 and ask for Christie\, who will be eager to help you! \nIf you are interested in coming but don’t want to camp\, there are several nice hotels within a short drive from Eby’s Pines.  The nearest hotel is Hampton Inn & Suites in Middlebury\, IN (phone (574) 822-0288).  Additional hotel information for Shipshewana\, IN\, can be found at:  http://www.Shipshewana.com \nWe hope to see you at the 2021 GLC Campout\, whether you can stay for the whole weekend or even just part of it!  In the meantime\, details on the campground amenities can be found at www.ebyspines.com. For more information\, check out our FAQs below or contact Brad and Alice Ambrose at bradnalice@charter.net or 616-406-7857. \n \n  \nFrequently Asked Questions about the A-BE-C Great Lakes Campout \nQ:  Who can attend the campout? \nA:  Anyone of any age\, adults and children\, living with bladder exstrophy\, cloacal exstrophy\, cloaca\, epispadias and hypospadias are invited to attend\, along with their immediate families\, extended families\, and friends!  Also\, you don’t need to live in a “Great Lakes” state.  (Campers have come from as nearby as Middlebury\, IN\, and as far away as Washington\, Massachusetts\, and Ontario\, Canada!)  Over the past few years we have seen an increasing number of families attend—ranging from 20 to 30 families—and the ages of those with exstrophy have ranged from toddler age to adults in our 50’s! \nQ:  What is the typical schedule of events for the weekend of the campout? \nA:  On the evenings of Friday (July 23) and Saturday (July 24) we are planning a campfire at one of our group’s campsites along Shady Lane.  On Saturday\, from 9:00 am to 5:00 pm\, everyone is invited to the Island Pavilion for games\, crafts\, and conversation.  Starting at 11:30 am on Saturday\, join us at the Island Pavilion for a picnic lunch followed by a group photo at 12:45 pm.  Apart from these activities\, the rest of the time is unscheduled so that everyone can enjoy the campground facilities and nearby attractions as they so choose.  (Note:  You are welcome to arrive a day or two early and/or stay an extra day or two after the weekend\, as some families have done in the past.  That way\, the campout can be part of a longer vacation and you can visit even more with other families who do the same!) \nQ:  What can we bring to the picnic lunch on Saturday? \nA:  Whatever you would like—but please don’t feel obliged to bring anything!  We will provide hot dogs (including skinless hot dogs and gluten-free buns)\, chips\, cookies\, and bottled water\, as well as plates\, plastic ware\, and napkins. \nQ:  We are inexperienced and/or unexcited when it comes to camping\, whether in tents or RVs.  Must our family “camp out” to come to the campout? \nA:  Not a problem!  We cannot offer any camping equipment to borrow\, but several nice hotels are located a short drive from Eby’s Pines.  (Our favorite\, closest hotel is Hampton Inn & Suites in Middlebury\, IN; see above for details.)  If you plan to stay in a local hotel\, please be aware that visitors to Eby’s Pines must register at the campground office upon arrival and obtain a day pass in order to use the pool\, playground\, and other campground facilities.  (Please call Eby’s Pines directly at 574-848-4583 for 2020 day pass fees.)  However\, if you plan to visit Eby’s Pines for just Saturday\, July 24\, upon registering at the campground office\, tell the staff person you are joining the “Ambrose group” at the Island Pavilion; your day pass should then be free of charge. \nQ:  Are there scholarships or other financial help available to cover travel costs for the campout? \nA:  Unfortunately not at this time.  The cost of the Saturday picnic lunch and renting the Island Pavilion for that day has been paid for out-of-pocket by the campout coordinators.  Over the past few years we (Alice and her husband Brad) had received donations (for example\, from doctors with whom Alice used to work) that helped offset some of these costs.  However\, we do not receive financial support from A-BE-C\, despite being affiliated with them. \nQ:  I wish there were a campout closer to me! \nA:  There can be!  All that is needed is one person or family to serve as a point of contact\, select a date and site\, and get the word out. (Exstrophy-related Facebook groups have been great for free publicity!)  Alice has experience coordinating regional campouts both here and in Washington state\, so please feel free to contact her if you would like more details or suggestions on getting started!
URL:https://www.bladderexstrophy.com/event/great-lakes-chapter-12th-annual-summer-campout-2021/
LOCATION:Eby’s Pines RV Park & Campground\, Bristol\, Indiana
CATEGORIES:Summer campout
ATTACH;FMTTYPE=image/png:https://www.bladderexstrophy.com/wp-content/uploads/2020/02/Screen-Shot-2014-12-18-at-11.00.29-AM-e1418929550674-1.png
ORGANIZER;CN="Alice & Brad Ambrose":MAILTO:bradnalice@charter.net
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200730
DTEND;VALUE=DATE:20200803
DTSTAMP:20260515T060952
CREATED:20200213T155101Z
LAST-MODIFIED:20200213T155101Z
UID:4900-1596067200-1596412799@www.bladderexstrophy.com
SUMMARY:2020 B.E.S.T Campout
DESCRIPTION:California Bladder Exstrophy Support Team (California B.E.S.T.)’s Annual Campout is a wonderful event at one of the most breathtaking locations on earth\, beautiful Lake Tahoe where we gather each year for a weekend of fun. \nThe campground is found in Toiyabe National Forest in South Lake Tahoe. It is centrally located in South Lake Tahoe and is within walking distance to Lake Tahoe. \nOur campout provides planned activities\, crafts\, organized potlucks for Friday and Saturday dinners\, and speakers. If camping is not your “thing” you are still welcome to participate. There are multiple hotels near the camping site you can stay in\, so you can join us for activities and discussions and then return to your room for the night. \nCalifornia B.E.S.T. is an organization of families\, individuals\, and medical professionals whose lives are touched by bladder exstrophy and related conditions.c
URL:https://www.bladderexstrophy.com/event/2020-b-e-s-t-campout/
LOCATION:Campground by the Lake\, 1150 Rufas Allen Blvd\, South Lake Tahoe\, CA\, 96150\, United States
CATEGORIES:Summer campout
ATTACH;FMTTYPE=image/jpeg:https://www.bladderexstrophy.com/wp-content/uploads/2019/05/ABEC_CA-BEST-meeting-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200321
DTEND;VALUE=DATE:20200322
DTSTAMP:20260515T060952
CREATED:20200309T175928Z
LAST-MODIFIED:20200309T175928Z
UID:5083-1584748800-1584835199@www.bladderexstrophy.com
SUMMARY:Annual 3 on 3 Basketball Tournament
DESCRIPTION:4th Annual BE Extraordinary 3-3 Basketball Tournament
URL:https://www.bladderexstrophy.com/event/annual-3-on-3-basketball-tournament/
LOCATION:Christ United Methodist Church 3101 Coit Rd. Plano TX\, 3101 Coit Rd.\, Plano\, TX\, United States
END:VEVENT
END:VCALENDAR