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X-WR-CALNAME:Cystinosis Research Network
X-ORIGINAL-URL:https://cystinosis.org
X-WR-CALDESC:Events for Cystinosis Research Network
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TZID:UTC
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TZOFFSETFROM:+0000
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DTSTART:20180101T000000
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BEGIN:VEVENT
DTSTART;TZID=UTC:20190504T120000
DTEND;TZID=UTC:20190505T120000
DTSTAMP:20260421T055258
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
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190909
DTEND;VALUE=DATE:20190910
DTSTAMP:20260421T055258
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/
LOCATION:South Carolina
CATEGORIES:Fundraising Events
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20191203
DTEND;VALUE=DATE:20191204
DTSTAMP:20260421T055258
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/
LOCATION:South Carolina
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:20200502
DTEND;VALUE=DATE:20200503
DTSTAMP:20260421T055258
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:20200507
DTEND;VALUE=DATE:20200508
DTSTAMP:20260421T055258
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/
LOCATION:South Carolina
CATEGORIES:Fundraising Events
ORGANIZER;CN="Cystinosis Research Network":MAILTO:info@cystinosis.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20201101
DTEND;VALUE=DATE:20201102
DTSTAMP:20260421T055258
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/
LOCATION:South Carolina
CATEGORIES:Fundraising Events
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210228
DTEND;VALUE=DATE:20210301
DTSTAMP:20260421T055258
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/
LOCATION:South Carolina
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
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20210501
DTEND;VALUE=DATE:20210601
DTSTAMP:20260421T055258
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/
LOCATION:South Carolina
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;TZID=UTC:20210814T090000
DTEND;TZID=UTC:20210814T144500
DTSTAMP:20260421T055258
CREATED:20210224T001230Z
LAST-MODIFIED:20210722T170215Z
UID:3021-1628931600-1628952300@cystinosis.org
SUMMARY:CRN Golf Tournament: Myrtle Beach
DESCRIPTION:The Myrtle Beach National Golf Club and Gail Potts are hosting a golf tournament benefitting the Cystinosis Research Network on Saturday\, August 14th. Click here to register today or make a donation through this website.
URL:https://cystinosis.org/event/crn-golf-tournament-myrtle-beach/
LOCATION:Myrtle Beach National Golf Club\, 4900 National Drive\, Myrtle Beach\, SC\, 29779\, United States
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2021/07/Screen-Shot-2021-07-22-at-1.00.08-PM.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220116T130000
DTEND;TZID=UTC:20220116T180000
DTSTAMP:20260421T055258
CREATED:20220113T173052Z
LAST-MODIFIED:20220113T203131Z
UID:3560-1642338000-1642356000@cystinosis.org
SUMMARY:A Benefit for Elle
DESCRIPTION:Join The Hilltop and Dicks Family for a fundraiser to benefit sweet Elle. Elle was diagnosed with cystinosis and her family\, friends and community have supported her every step of the way. Her father is Jon Dicks\, President of the Cystinosis Research Network. You can read about the first few years of her journey as documented here in the Fall 2019 issue of The Cystinosis Advocate Newsletter. \nOn Sunday\, January 16th\, a local bar and restaurant will donate tips and a portion of sales to benefit Elle and her fight against cystinosis. If you are not in the Cincinnati area\, you can donate to the Cystinosis Research Network here. \nThank you for your support!
URL:https://cystinosis.org/event/a-benefit-for-elle/
LOCATION:The Hilltop\, 950 Pavillion Street\, Cincinnati\, OH\, 45202\, United States
CATEGORIES:Fundraising Events
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20220228
DTEND;VALUE=DATE:20220301
DTSTAMP:20260421T055258
CREATED:20220128T232845Z
LAST-MODIFIED:20220228T051018Z
UID:3588-1646006400-1646092799@cystinosis.org
SUMMARY:Rare Disease Day 2022
DESCRIPTION:February 28th marks the 12th annual Rare Disease Day (RDD). \nObserved on the rarest day of the year\, the global event campaigns for equity for the over 7\,000 rare diseases currently identified. Among those rare diseases is cystinosis. Cystinosis is a genetic\, lysosomal storage disorder where unusual cystine accumulation occurs in every cell in the body. The cystine buildup causes tissue and organ failure\, leading to kidney failure\, muscle wasting\, swallowing difficulty\, diabetes\, photophobia\, and more. Our cystinosis community is known to have a population of 2\,000 worldwide with 600 residing in the U.S. \nIf you are ready to take action\, here are a few ways we can work together make a better world for those living with a rare disease. Thank you for visiting! \n– Virtual events: \n\nRare Disease Day: A Global Priority for Equity (Eurordis) and Demystifying the methodology to determine market value when remunerating the patient community for interactions with the pharmaceutical industry.\nRare Disease Week on Capitol Hill via the EveryLife Foundation.\nRare Disease Day with the NIH (National Institutes of Health).\nRare Disease Day with NORD.\nQuinnipiac RDD Symposium featuring CRN President Jonathan Dicks. Register here for the in-person or virtual option to where patients\, family members\, and researchers will discuss their stories and promote education\, awareness\, and advocacy. It is also an accredited continuing medical education (CME) activity for physicians.\nRare Disease Day Patient Panel with Wego Health. Join rare disease patient leaders to discuss resiliency\, self care\, story sharing\, and raising awareness to support the rare community.\nRare Disease Day Webinar on Feb 24 with the Canadian Organization for Rare Disorders. Bringing Canada’s Rare Disease Drug Strategy from Vision to Reality.\nThe Rare Disease Diversity Coalition and Black Women’s Health initiative is Feb 28 at 12pm ET. Discuss issues facing Black\, Indigenous and People-of-Color (BIPOC) living with a rare disease https://bit.ly/3HDWVyF. \n\n– The AllStripes cystinosis research program is here and we are proud to be a partner. We are looking for families impacted by cystinosis who want to advance cystinosis research from home. You can learn more here: allstripes.com/cystinosis. \n– Share information about rare disease within your networks and social media. For example: Join the Global Genes challenge by posting a photo/video wearing denim with #ShowYourGenes. \n– Light Up for Rare through rarediseaseday.org. \n– School Toolkit. The kit may help you have discussions with teachers or young children about rare disease. \n– Equity Toolkit. Rarediseaseday.org has featured tools to assist people living with a rare disease improve social opportunity\, non-discrimination in education and work\, and equitable access to health\, social care\, diagnosis and treatment. \n– Donate. You can contribute towards the research\, education and support efforts of the CRN by clicking here. \n– View the video message from the Adult Leadership Advisory Board; start watching here.
URL:https://cystinosis.org/event/rare-disease-day-2022/
LOCATION:South Carolina
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2022/01/RDD_Support-Pledge-Strapline-1920x1080_ENGLISH.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20220618T090000
DTEND;TZID=UTC:20220618T140000
DTSTAMP:20260421T055258
CREATED:20220311T004635Z
LAST-MODIFIED:20220315T194711Z
UID:3662-1655542800-1655560800@cystinosis.org
SUMMARY:2nd Annual SC Golf Fundraiser
DESCRIPTION:Gail Potts and her South Carolina team are back at it! \nAfter a successful inaugural event last summer\, Gail continues to honor her daughter Deanna’s legacy with a golf fundraiser to benefit the Cystinosis Research Network (CRN). Proceeds from the event will support research\, family support and education for those impacted by cystinosis.    \nThis year’s golf outing takes place on June 18 at Wild Wing Avocet Golf Course and includes a barbecue lunch. $260 per team or $65 per player with a 9am shotgun start. Get started by registering online today. \nIf you can’t make it to Myrtle Beach\, there are additional ways to support Gail’s cause; you can sponsor a hole or contribute a raffle prize. She also has an Facebook fundraiser you can access here or donate on our web page. \nQuestions? Contact Elwin Miles at elwin.miles@gmail.com or 843-222-5974.  \nCheck out this highlights reel from the 2021 golf outing on our YouTube channel. \nThank you for visiting!
URL:https://cystinosis.org/event/2nd-annual-south-carolina-golf-fundraiser/
LOCATION:Wild Wing Avocet Golf Course\, 1000 Wild Wing Boulevard\, Conway\, South Carolina\, 29526
CATEGORIES:Fundraising Events
ATTACH;FMTTYPE=image/png:https://cystinosis.org/wp-content/uploads/2022/03/Screen-Shot-2022-03-10-at-7.25.04-PM.png
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