10 events found.
Fundraising Events
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Seed-Balls for Cystinosis
(Left) Carter'(s last boat ride before G-J tube insertion. (Right) Look who turned 2! Over 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 […]
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Giving Tuesday
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 […]
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57 Miles for Cystinosis
DE, United States -
Cystinosis Awareness Day – 3rd Annual
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. Months of planning go into Cystinosis Awareness Day. In-person events like 57 Miles for Cystinosis […]
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LLLFF Virtual 5K
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 […]
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Mulligans Fore Morgan
5820 Rockside Woods Blvd N 5820 Rockside Woods Blvd N, Independence, OH, United StatesJoin us for our first Mulligans Fore Morgan event at TopGolf in Cleveland on Sunday, November 1st at 11:00 AM. Registration 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. 2020 has brought […]
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Rare Disease Day 2021
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. This theme is our call to action. Let’s elevate our voices as a united rare disease community. […]
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Miles for Moose 5.7 Mile Virtual Walk/Run
Support the first annual Miles for Moose fundraiser.
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Featured
Cystinosis Awareness Day – 2021
Welcome to the 4th Annual Cystinosis Awareness Day! Started 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. Since it's inception, Cystinosis Awareness Day […]
