Miles for Moose 5.7 Mile Virtual Walk/Run
Support the first annual Miles for Moose fundraiser.
10 events found.
Fundraising Events
Events
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Cystinosis Awareness Day – 2021
FeaturedWelcome 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 […]
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CRN Golf Tournament: Myrtle Beach
FeaturedMyrtle Beach National Golf Club 4900 National Drive, Myrtle Beach, SC, United StatesThe 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.
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Cystinosis Sessions: January Video Call
Saturday, January 8th at 4:00pm ET, join the Adult Leadership Advisory Board (ALAB). Discuss mental toughness and ways to stay positive with others within the cystinosis community. Please note: this is not just for adults living with cystinosis, everyone interested is invited to attend. To join, click: https://zoom.us/j/2663523786 Meeting ID: 266 352 3786 Here are […]
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A Benefit for Elle
FeaturedThe Hilltop 950 Pavillion Street, Cincinnati, OH, United StatesJoin 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 […]
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Rare Disease Day 2022
FeaturedFebruary 28th marks the 12th annual Rare Disease Day (RDD). Observed 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 […]
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2nd Annual SC Golf Fundraiser
FeaturedWild Wing Avocet Golf Course 1000 Wild Wing Boulevard, Conway, South CarolinaGail Potts and her South Carolina team are back at it! After 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. This […]
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Rare Disease Day 2023
February 28, 2023 is Rare Disease Day. A movement created by Eurordis, Rare Disease Day unites an international community and promotes progress for all those affected. Rare Disease Day raises […]
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Informational Q&A: Cystinosis QoL Study
We will host an informational session on the CRN funded study "Development of a patient-reported outcome to measure the health-related quality of life of children and adolescents with cystinosis: QUALIFY-US" The research team will be available to explain the project and what participation would involve. Attendees will have the opportunity to ask questions. March 9, […]
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Cystinosis Awareness Day
On May 7, 2023 the cystinosis community will come together in honor of Cystinosis Awareness Day (CAD). Now in it's sixth year, CAD is a global effort to raise funds and educate the general population about this disease. This year's campaign will include testimonials from cystinosis warriors, caregivers/family members and international cystinosis organizations. In addition, […]
