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X-WR-CALDESC:Events for Soft Bones
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DTSTART;TZID=America/New_York:20240905T150000
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DTSTAMP:20260531T001010
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UID:10473-1725548400-1725552000@softbones.org
SUMMARY:Appy Hour
DESCRIPTION:The myHPP app was developed by patients and physicians to transform patient care and inform hypophosphatasia research. It puts patients in charge of tracking their health and makes them a valuable partner in research for better HPP treatment and care.  \n  \nCome join us on September 5\, 2024 at 3 PM EDT\, over Zoom\, to learn more about myHPP and how to navigate the app. Learn from tech savvy patient users and feel free to ask questions along the way. Join us in taking actionable steps to transform healthcare. Download the app in the Apple Store or Google Play Store today! \n  \nRegistration is required. Please register here. \n  \nIf you have any questions\, please reach out to Cindy Reasor at Cindy@SoftBones.org.
URL:https://softbones.org/event/appy-hour-6/
LOCATION:Online
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240919T190000
DTEND;TZID=America/New_York:20240919T200000
DTSTAMP:20260531T001010
CREATED:20240831T055006Z
LAST-MODIFIED:20240831T055006Z
UID:10705-1726772400-1726776000@softbones.org
SUMMARY:HPP Empowered: September 19\, 2024 at 7:00 PM ET
DESCRIPTION:Register Today For This Informative Webinar. \nHave you or a loved one been diagnosed with hypophosphatasia (HPP)? \nJoin Alexion Pharmaceuticals\, Inc. as they host their HPP Empowered virtual educational event on Thursday\, September 19th\, 2024\, at 7:00 PM ET. \nJoin HERE. \n\n\nPresented by Alexion AstraZeneca Rare Disease.
URL:https://softbones.org/event/hpp-empowered-september-19-2024-at-700-pm-et/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Asia/Kolkata:20240923T100000
DTEND;TZID=Asia/Kolkata:20240923T170000
DTSTAMP:20260531T001010
CREATED:20231212T034310Z
LAST-MODIFIED:20240913T014822Z
UID:8590-1727085600-1727110800@softbones.org
SUMMARY:Join us for the 16th Annual Golf Classic 2024 and 1st Annual Pickleball Classic
DESCRIPTION:Join us for our 16th Annual Soft Bones Golf Classic to be held on Monday\, September 23rd\, 2024. This annual fundraiser supports Roger’s grandson Cannon Sittig\, who lives with HPP (pictured in the 4th photo) along with his daughter\, Soft Bones Chairman of the Board and Founder Deborah Nettune Fowler. Also this year\, Somerset Hills has added pickleball courts to their facilities and we are excited to announce our 1st Pickleball Classic will take place on the same day.  \n  \nSoft Bones 16th Annual Golf Classic \nGolfers will enjoy a full day of play on a renowned course in the best ball or scramble format. There will be numerous opportunities to earn prizes for individuals and groups. Participants will have a delicious lunch before teeing off. Cocktails\, drinks\, and snacks will be available throughout the day. Gift certificates for dinner are included to end the day’s outing. \nThank you to Atlantic Health System for continuing to be our tournament sponsor for this important event. We hope you will join us for a day of top-notch golf to support this worthy cause. \n   \nGolf Event Schedule:  \n10:00 AM    Registration/Driving Range open  \n10:30 AM    Luncheon Begins \n11:50 AM    Welcome Ceremony (parking lot near golf cart launch) \n12:00 PM    Shotgun Start \n  \nPlease note that this event is held rain or shine. \n  \nSoft Bones 1st Annual Pickleball Classic \nAs pickleball takes the country by storm\, we invite pickleball enthusiasts to come out and support Soft Bones. There will be a 30 minute warm up with a pro before we start the tournament. Winner of the pickleball tournament will receive a prize. Light courtside refreshments will be served. After play\, guests can enjoy a BBQ lunch. The Pro Shop will be open to all. Please bring your own paddle. Balls will be provided. If you do not have your own\, there will be paddles available to use. \n  \nPickleball Event Schedule:  \n9:00   AM   Registration \n9:30   AM   Pickleball Warm Up with a Pro \n10:00 AM   Pickleball Tournament  \n11:30 AM   Lunch \n  \nRegister now: https://app.donorview.com/l9pWP \n  \nTo register without incurring a fee\, you can sign up online and mail a check\, pay by Venmo at @Soft-Bones (last four digits 1081)\, or through Zelle at Info@SoftBones.org. In the memo section\, please include your full name and write “Soft Bones 2024 Golf Classic”. \n  \nNot a golfer or pickleball player? Consider one of our sponsorships to show your support or to highlight your business.
URL:https://softbones.org/event/soft-bones-16th-annual-golf-classic-2024/
LOCATION:Somerset Hills Country Club\, 180 Mine Mount Rd\, Bernardsville\, New Jersey\, 07924
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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240924T150000
DTEND;TZID=America/New_York:20240924T160000
DTSTAMP:20260531T001010
CREATED:20240911T005823Z
LAST-MODIFIED:20240911T005823Z
UID:10742-1727190000-1727193600@softbones.org
SUMMARY:HPP AND ME Live Zoom Chat
DESCRIPTION:Register for your spot today! \n\n\nJoin us on September 24th at 3 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-14/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240928T190000
DTEND;TZID=America/New_York:20240928T200000
DTSTAMP:20260531T001010
CREATED:20240831T055900Z
LAST-MODIFIED:20240831T060211Z
UID:10709-1727550000-1727553600@softbones.org
SUMMARY:HPP Empowered: September 28\, 2024 at 1:00 PM ET
DESCRIPTION:Register Today For This Informative Webinar. \nHave you or a loved one been diagnosed with hypophosphatasia (HPP)? \nJoin Alexion Pharmaceuticals\, Inc. as they host a LIVE HPP Empowered in-person educational event on Saturday\, September 28th\, 2024\, at 1:00 PM ET. \n\nLocation: Mitchell’s Steakhouse  \n1408 Polaris Pkwy\, Columbus\, OH 43240 \n\nJoin HERE. \n\n\nPresented by Alexion AstraZeneca Rare Disease.
URL:https://softbones.org/event/hpp-empowered-september-28-2024-at-100-pm-et/
LOCATION:Mitchell’s Steakhouse\, 1408 Polaris Pkwy\, Columbus\, OH\, 43240
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20240929T000000
DTEND;TZID=America/New_York:20241031T000000
DTSTAMP:20260531T001010
CREATED:20240905T121211Z
LAST-MODIFIED:20241026T055602Z
UID:10727-1727568000-1730332800@softbones.org
SUMMARY:2024 Cannonball 5K Run\, Roll\, or Stroll
DESCRIPTION:It’s time to Run\, Roll\, or Stroll!\nRegistration for Soft Bones 3rd annual Cannonball 5K Run\, Roll or Stroll is NOW LIVE! Now until October 31st\, challenge yourself to finish a 5K! Complete the 5K in a single day or pace yourself to hit your goal over the course of the month. 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 meeting is sponsored in part by Alexion\, AstraZeneca Rare Disease
URL:https://softbones.org/event/2024-cannonball-5k-run-roll-or-stroll/
LOCATION:Online
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