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DTSTART;VALUE=DATE:20210507
DTEND;VALUE=DATE:20210508
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CREATED:20210209T051945Z
LAST-MODIFIED:20210429T233752Z
UID:2957-1620345600-1620431999@cystinosis.org
SUMMARY:Cystinosis Awareness Day - 2021
DESCRIPTION:Welcome to the 4th Annual Cystinosis Awareness Day! \nStarted in 2018\, Cystinosis Awareness Day was created to bring attention to our rare disease. Educating the general public and medical communities about cystinosis has the power to create a better future for the ~2\,000 diagnosed and those awaiting a diagnosis. \nSince it’s inception\, Cystinosis Awareness Day has become a highly anticipated event. Each year we uncover ways to promote understanding within our personal networks and beyond. Cystinosis Awareness Day has also proven to be a successful fundraising initiative. \nWe’d appreciate your help this May 7th. Please consider participating in one or more of the ways outlined below. We are small but together we are mighty! \nRaise Funds  \nYour donations fuel educational and support programming and cystinosis research. We are currently funding cystinosis studies over a range of areas. This includes male reproduction\, cognitive function\, measuring the effectiveness of cystine therapy\, and more. Visit our Grants Awarded page to learn more. \nFor the 4th Annual Cystinosis Awareness Day\, your hard earned dollars will go 4x as far. We’ve secured donors ready to match your contribution! For example: a $5 donation turns into $20\, $57 becomes $228\, or $100 translates to $400. Donations will be matched up to $5\,700 (that’s $22\,800 for our community!) Click here to donate. \nShow your love for the Miles for Moose 5.7 mile walk. Moose is a growing little boy with an amazing “nana” who has been putting together this fundraising event in his honor prior to the COVID-19 pandemic. Show your support by registering here. \n \nRaise Awareness  \nLet’s eliminate those misconceptions about cystinosis. This is the time to break the stigmas and bust down any myths you may have encountered. \nMYTH: Cystinosis journeys are all the same. \nMYTH: A kidney transplant will cure cystinosis. \nMYTH: I am defined by my disease. \nIf you are ready to help this myth busting mission\, start sharing today. This can be as small as a conversation with yourself/a loved one or a bit larger like sharing with your network of social media followers using #cystinosisaware. Follow the Cystinosis Research Network for ideas and ways to have your “myth” featured for Cystinosis Awareness Day. (Links to CRN social channels found in the icons at the bottom of the page) \nThe Adult Leadership Advisory Board\, our umbrella group with a membership made entirely of adults living with cystinosis\, has launched a “Succeeding with Cystinosis” campaign for Cystinosis Awareness Day. They’ve challenged the community to search for the successes and failures we’ve experienced within the last year and to share with the group by emailing Sara at shealy194@hotmail.com. \nThank you for continuing to fight for our cystinosis warriors\, this May 7th and every day! \n 
URL:https://cystinosis.org/event/cystinosis-awareness-day-2021/
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2021/02/CAD_2021.png
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210501
DTEND;VALUE=DATE:20210601
DTSTAMP:20210402T011222Z
CREATED:20191106T170131Z
LAST-MODIFIED:20210402T011222Z
UID:2174-1619827200-1622505599@cystinosis.org
SUMMARY:Miles for Moose 5.7 Mile Virtual Walk/Run
DESCRIPTION:
URL:https://cystinosis.org/event/miles-for-moose/
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2019/11/Header4b.png
ORGANIZER;CN="Andrea Carr":MAILTO:milesformoose57@gmail.com
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210228
DTEND;VALUE=DATE:20210301
DTSTAMP:20210218T035719Z
CREATED:20210209T045540Z
LAST-MODIFIED:20210218T035719Z
UID:2950-1614470400-1614556799@cystinosis.org
SUMMARY:Rare Disease Day 2021
DESCRIPTION:The goal of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. This year’s Rare Disease Day theme is : Rare is many. Rare is strong. Rare is proud. \nThis theme is our call to action. Let’s elevate our voices as a united rare disease community.\nLeading up to Rare Disease Day on February 28th\, we invite each person impacted by rare disease to share their #RareIn60. \nCreate a 60-second video\,\n60-second photo collage or\n60-word summary of what you’d like others to know about cystinosis/the rare disease that has affected your life. \nYour message can be geared towards friends and family\, colleagues\, students\, health care professionals\, etc. \nTo participate: \n– Create your #RareIn60\n– Post online the week of February 22 (and/or send directly to cjohnstone@cystinosis.org)\n– Use #RareIn60\n– Let us know you’ve joined the campaign! \nRare Disease Day Raffle \nThe Adult Leadership Advisory Board (ALAB) has launched a fundraiser in honor of Rare Disease Day. Every $5 donation received is an entry to win a $100 Amazon gift card and some CRN swag. Enter for your chance to win by selecting “ALAB – Rare Disease Day” from the donate page drop down. The winner will be drawn on March 1. Good luck!
URL:https://cystinosis.org/event/rare-disease-day-2021/
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2021/02/Twitter-Banner-1500x500-1.png
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
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DTSTART;TZID=America/Halifax:20201101T110000
DTEND;TZID=America/Halifax:20201101T150000
DTSTAMP:20201021T172215Z
CREATED:20201007T164848Z
LAST-MODIFIED:20201021T172215Z
UID:2603-1604228400-1604242800@cystinosis.org
SUMMARY:Mulligans Fore Morgan
DESCRIPTION:Join us for our first Mulligans Fore Morgan event at TopGolf in Cleveland on Sunday\, November 1st at 11:00 AM. \nRegistration is $75 per player for 3 hours of unlimited play. Each golf bay will hold teams of 6.  An “All-American” lunch is included. Guests will pay individually for alcoholic beverages. \n \n  \n2020 has brought Morgan Peachman a new kidney\, and a new lease on life. After turning 13 this summer\, and hitting her six month kidney-versary last month\, she’s been cleared for most normal activities. And she’ll be hitting the day’s ceremonial first tee shot! \nWhile nothing feels normal this year\, The Peachman Family is keeping with the theme of changing times by bringing their family’s annual fall fundraising event to TopGolf in Cleveland to ensure social distancing! \nWhether you’re an avid golfer\, playing for fun\, or have never hit a golf ball in your life\, our tournament style format will hit all the marks. Competitive\, lots of fun and in support of a good cause\, we hope you’ll join us November 1st! If you can’t attend\, donations are welcomed and sponsorship opportunities are available. Contact Jen Peachman at jennifer.peachman@gmail.com for details or register using the form below.
URL:https://cystinosis.org/event/morgan/
LOCATION:5820 Rockside Woods Blvd N\, 5820 Rockside Woods Blvd N\, Independence\, OH\, 44131\, United States
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/10/Mulligans-Fore-Morgan-Logo.png
ORGANIZER;CN="Jen Peachman":MAILTO:jennifer.peachman@gmail.com
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20201101
DTEND;VALUE=DATE:20201102
DTSTAMP:20201021T202417Z
CREATED:20201021T184456Z
LAST-MODIFIED:20201021T202417Z
UID:2705-1604188800-1604275199@cystinosis.org
SUMMARY:LLLFF Virtual 5K
DESCRIPTION:On the one year anniversary of Laura McGinnis’ passing\, the Live Like Laura Fun Fund (LLLFF) was launched. Laura lived life in pursuit of adventure\, making memories every step of the way. We’d like to keep her spirit alive by fulfilling as many “fun” requests for the cystinosis community as possible. To grow our funding\, we are hosting a virtual 5k on November 1\, 2020.\n\nWe invite friends\, family\, and anyone who has been touched by her story and/or cystinosis to take part. It doesn’t matter if you walk\, jog\, stroll\, bike\, or scooter; let’s take this time to move our bodies and reflect.\n\nHosting a virtual 5k means you can participate from anywhere in the world! We’ve got in-person teams meeting on November 1st from Pennsylvania to Kauai. \n\n\n\nOnline registration is $25 per person. As a small token of gratitude\, you’ll receive a commemorative “Live Like Laura” ornament. For any questions\, contact Frankie McGinnis at frankiemcginnis@gmail.com.
URL:https://cystinosis.org/event/lllff-virtual-5k/
CATEGORIES:Fundraising Events
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20200507
DTEND;VALUE=DATE:20200508
DTSTAMP:20200504T182950Z
CREATED:20191130T062559Z
LAST-MODIFIED:20200504T182950Z
UID:2313-1588809600-1588895999@cystinosis.org
SUMMARY:Cystinosis Awareness Day - 3rd Annual
DESCRIPTION:Cystinosis Awareness Day is recognized as May 7th for the most commonly linked cystinosis mutation\, the 57-kb deletion. This marks the third year we’ve come together on this day to support education\, awareness\, research\, and fundraising for our rare disease. \nMonths of planning go into Cystinosis Awareness Day. In-person events like 57 Miles for Cystinosis or Miles for Moose require training\, sponsors\, team coordination\, and consume a massive amount of time and dedication. With the latest COVID-19 restrictions\, this year’s events have been canceled\, postponed or re-imagined. We thank the entire community for your unwavering support – now more than ever. \nIt’s like our CRN President says\, “Cystinosis doesn’t stop. Until there is a cure\, neither will we.” \nCystinosis does not ease up during a worldwide pandemic; it does not understand quarantine. Not for one single day\, not for one hour\, not for one second do bodies living with cystinosis get a break. And we thank you for enduring this ongoing battle with us. \nHere are a few ways to help us in this fight: \n\nLike & share our awareness video\nUpdate your Facebook profile frame\nShare your cystinosis experience with a friend\, neighbor\, or colleague (in compliance with your local COVID-19 guidelines)\nRead inspiring cystinosis stories\nDonate\nStart a fundraiser by emailing info@cystinosis.org\n\nIf you’d like to learn more about cystinosis resources and research\, click here. We are proud to be one of the only organizations to provide comprehensive support\, education\, awareness\, and research relevant to each point in the cystinosis journey. \nThank you!
URL:https://cystinosis.org/event/cystinosis-awareness-day-3rd-annual/
CATEGORIES:Fundraising Events
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20200502
DTEND;VALUE=DATE:20200503
DTSTAMP:20200414T221034Z
CREATED:20200221T065804Z
LAST-MODIFIED:20200414T221034Z
UID:2368-1588377600-1588463999@cystinosis.org
SUMMARY:57 Miles for Cystinosis
DESCRIPTION:
URL:https://cystinosis.org/event/57-miles-for-cystinosis-2020/
LOCATION:DE\, United States
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2020/02/Website_Header-1.png
ORGANIZER;CN="Clinton Moore":MAILTO:Clintonmoore1@aol.com
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20191203
DTEND;VALUE=DATE:20191204
DTSTAMP:20191222T124032Z
CREATED:20191120T162128Z
LAST-MODIFIED:20191222T124032Z
UID:2254-1575331200-1575417599@cystinosis.org
SUMMARY:Giving Tuesday
DESCRIPTION:The CRN is a proud participant in Giving Tuesday – a global movement encouraging people to “do good.” This is our fifth year celebrating the event that has inspired millions to give\, collaborate\, and celebrate generosity. The Tuesday after U.S. Thanksgiving has been designated as the global day for giving back. It was created in response to the shopping frenzy surrounding Black Friday and Cyber Monday. \nHere’s a glimpse of the overall impact from 2018’s Giving Tuesday: \n\n150+ countries participated\n110+ community coalitions involved\n$440M+ dollars raised online\n\nGiving Tuesday – December 3rd\, 2019 \n#GreatGivers Campaign \nThis year we’ve asked community members to reflect on those who’ve helped along the cystinosis journey. Leading up to Giving Tuesday\, we are sharing some of those experiences to recognize the sacrifice\, generosity\, and selflessness many of us have been fortunate to benefit from. A nod to those #GreatGivers. Click on their stories below. \n\nAna\nCheryl\nGail\nIna\nJana\nJenn\nSara\nSteve\n\nWays to Help  \nYour online donation will benefit our cystinosis community as we continue to provide grassroots research\, meaningful support and educational programs. However\, there are many ways to “give” beyond monetary donations. Visit our How to Help page. \nUPDATE: Our #GreatGivers campaign surpassed an online fundraising goal of $5\,000! \nA special thank you to each person who has supported the CRN in our quest for improved treatments and ultimately\, a cure for cystinosis. \nHappy Holidays!
URL:https://cystinosis.org/event/giving-tuesday/
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/jpeg:https://cystinosis.org/wp-content/uploads/2019/11/GivingTues2019.jpg
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190909
DTEND;VALUE=DATE:20190910
DTSTAMP:20191010T153553Z
CREATED:20191010T153425Z
LAST-MODIFIED:20191010T153553Z
UID:2141-1567987200-1568073599@cystinosis.org
SUMMARY:Seed-Balls for Cystinosis
DESCRIPTION:(Left) Carter'(s last boat ride before G-J tube insertion. (Right) Look who turned 2!  \nOver the last few years\, Carter’s family has taken a strong interest in monarch butterflies. Post diagnosis\, Grandmom (Carrie) knew she wanted to create an event to honor his resilient spirit. To celebrate Carter’s second birthday and new found love for butterflies\, they’ve partnered with Seed-Balls. This fundraiser sells clay\, compost\, and wildflower seeds to support pollinators AND proceeds benefit the Cystinosis Research Network. \n  \nUPDATE: Seed-Balls orders are now closed. If you are still interestd in supporting Carter and the cystinosis community\, you can make a secure donation here. \nThank you for your support!
URL:https://cystinosis.org/event/seed-balls-for-cystinosis/
CATEGORIES:Fundraising Events
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20190504T120000
DTEND;TZID=UTC:20190505T120000
DTSTAMP:20190503T184057Z
CREATED:20190417T185926Z
LAST-MODIFIED:20190503T184057Z
UID:1532-1556971200-1557057600@cystinosis.org
SUMMARY:2nd Annual 57 Miles for Cystinosis
DESCRIPTION:
URL:https://cystinosis.org/event/57-miles/
LOCATION:Sussex Central High School\, 26026 Patriots Way\, Georgetown\, DE\, 19947\, United States
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2019/04/57miles_Website.png
ORGANIZER;CN="Clinton Moore":MAILTO:Clintonmoore1@aol.com
END:VEVENT
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