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X-WR-CALDESC:Events for Soft Bones
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BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20251001T000000
DTEND;TZID=America/Halifax:20251031T000000
DTSTAMP:20260413T154200
CREATED:20250918T162509Z
LAST-MODIFIED:20251002T115617Z
UID:12898-1759276800-1761868800@softbones.org
SUMMARY:2025 Cannonball 5K Run\, Roll\, or Stroll
DESCRIPTION:Ready! Set! Go!\nRegistration is now open for the 4th Annual Cannonball 5K Run\, Roll or Stroll. From now until October 31st\, challenge yourself and friends to finish a 5K! Complete this in a single day or pace yourself to hit your goal. Gather your friends and family to participate locally or virtually.  \n  \nSign up directly: HERE \n  \nDid you know you can donate on behalf of someone running\, rolling\, or strolling? Support them during their challenge! Visit our Cannonball 5K page to learn how you can participate and support us!  \n  \nThis event is sponsored in part by Alexion\, AstraZeneca Rare Disease
URL:https://softbones.org/event/2025-cannonball-5k-run-roll-or-stroll/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251023T190000
DTEND;TZID=America/New_York:20251023T210000
DTSTAMP:20260413T154200
CREATED:20251020T150139Z
LAST-MODIFIED:20251020T150403Z
UID:13280-1761246000-1761253200@softbones.org
SUMMARY:STRENSIQ Perspectives - October 23\, 2025
DESCRIPTION:Gain a new perspective on treatment! \n  \nJoin Alexion\, AstraZeneca Rare Disease on October 23rd at 7:00 PM Eastern for a virtual meeting on STRENSIQ. Attendees will have the opportunity to learn from an experienced HPP healthcare provider\, HPP patient or caregiver\, and OneSourceTM. \n  \nRegistration before the event is required to receive a link to the webinar. Register HERE. \n  \n \n  \n 
URL:https://softbones.org/event/strensiq-perspectives-october-23-2025/
LOCATION:Online
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251025T110000
DTEND;TZID=America/New_York:20251025T130000
DTSTAMP:20260413T154200
CREATED:20250919T130814Z
LAST-MODIFIED:20250919T132624Z
UID:12902-1761390000-1761397200@softbones.org
SUMMARY:Join Us for an In-Person Midwest 1 and Midwest 2 Region Meeting - October 25\, 2025
DESCRIPTION:Do you live in Illinois\, Indiana\, Iowa\, Kentucky\, Michigan\, Minnesota\, Ohio\, West Virginia\, or Wisconsin? \n  \nJoin us in Madison\, IN! \n  \nJoin Midwest 1 Region Lead\, Cindy R.\, and Midwest 2 Region Lead\, Jennifer W.\, for a luncheon on October 25\, 2025\, from 11 AM – 1 PM Eastern. Connect with patients from your region and neighboring states\, too! Lunch will be provided. \n  \nRegistration is required and will close on October 19th. Please register HERE. \n  \nFollowing the meeting\, attendees can participate in our Annual Cannonball 5K Run\, Roll\, or Stroll. Learn how you can participate HERE. \n  \nThis meeting is sponsored in part by Alexion\, AstraZeneca Rare Disease. If you have any questions\, please reach out to Cindy@SoftBones.org.
URL:https://softbones.org/event/join-us-for-an-in-person-midwest-1-and-midwest-2-region-meeting-october-25-2025/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Denver:20251025T110000
DTEND;TZID=America/Denver:20251025T140000
DTSTAMP:20260413T154200
CREATED:20250827T162801Z
LAST-MODIFIED:20250917T123546Z
UID:12710-1761390000-1761400800@softbones.org
SUMMARY:Join Us for an In-Person Southwest Region Meeting - October 25\, 2025
DESCRIPTION:Calling all HPP families from Arizona\, Hawaii\, Nevada\, New Mexico\, Southern California\, and Utah. \n  \nMeet us in Tempe\, AZ! \n  \nJoin Southwest Region Leads for a luncheon on Saturday\, October 25\, 2025\, from 11 AM – 2 PM MST. \n  \nAll Southwest Region members and families are welcome. Dr. Pamela Smith from Phoenix Children’s Hospital will be presenting. OneSource Case Managers\, Joan Gustin and Angela Corso\, will be there to chat and field questions. Light lunch/finger foods and soft drinks will be served. We hope to see you there!  \n  \nRegistration is required and will close on October 11\, 2025. Please register HERE.  \n  \nThis meeting is sponsored in part by Alexion\, AstraZeneca Rare Disease. If you have any questions\, please reach out to Cindy@SoftBones.org.
URL:https://softbones.org/event/join-us-for-an-in-person-southwest-region-meeting-october-25-2025/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251025T113000
DTEND;TZID=America/New_York:20251025T140000
DTSTAMP:20260413T154200
CREATED:20251002T200218Z
LAST-MODIFIED:20251002T205611Z
UID:13141-1761391800-1761400800@softbones.org
SUMMARY:Join Us for a  In-Person Midwest 1 Region Meeting - October 25\, 2025
DESCRIPTION:Do you live in Illinois\, Indiana\, Iowa\, Minnesota\, or Wisconsin?  \n  \nJoin us in Madison\, WI! \n  \nRegion Leads Gerald G. and Jan R. will be hosting a luncheon on October 25\, 2025 from 11:30 AM – 2:00 PM Central. All Midwest 1 Region members and families are welcome to learn more about your local HPP support system and connect with fellow HPP families. Lunch will be provided. \n  \nRegistration is required and will close on October 19th. Please register HERE. \n  \nThis meeting is sponsored in part by Alexion\, AstraZeneca Rare Disease. If you have any questions\, please reach out to Cindy@SoftBones.org.
URL:https://softbones.org/event/join-us-for-a-midwest-1-region-in-person-meeting-october-25-2025/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251030
DTEND;VALUE=DATE:20251031
DTSTAMP:20260413T154200
CREATED:20251008T181015Z
LAST-MODIFIED:20251008T181603Z
UID:13161-1761782400-1761868799@softbones.org
SUMMARY:World HPP Day - October 30\, 2025
DESCRIPTION:We are getting ready for World HPP Day\, recognized on October 30th. This is a time for the HPP community to come together and raise awareness about hypophosphatasia (HPP). \nThis year\, we celebrate the progress we’ve made\, but recognize how far we still have to go in understanding the impact of low alkaline phosphatase (ALP) in the body and how it can go undetected for many years. \n\nWhen something is glaringly present and not addressed\, we say there’s an “elephant in the room.” However\, with our HPP mascot\, the HIPPO\, it’s time to acknowledge the “HIPPO in the room.” \n\nVisit our page to learn how you can get involved HERE. \n\nTogether\, we can raise awareness and identify the Hippo in the room!
URL:https://softbones.org/event/world-hpp-day-october-30-2025/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20251030T130000
DTEND;TZID=America/Halifax:20251030T140000
DTSTAMP:20260413T154200
CREATED:20251008T175409Z
LAST-MODIFIED:20251008T175409Z
UID:13159-1761829200-1761832800@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat - October 30\, 2025
DESCRIPTION:Register for your spot today! \n\n\nJoin us on October 30\, 2025\, at 1 PM Eastern for an HPP AND ME Zoom Chat. Connect with others and share your experiences with HPP. Registration is required. We hope to see you there! \nClick here to register.
URL:https://softbones.org/event/hpp-and-me-live-zoom-chat-october-30-2025/
LOCATION:Online
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