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It's the 5th Annual Care for Rare Swim Challenge
Spring 2026
Several swim team communities, including Metro Lifetime Fitness and Newark Academy, proudly participate in the Care for Rare Swim Challenge in honor of Rare Disease Day. Swimming holds special significance within the rare disease community, as it is one of the few physical activities considered safe and approved for individuals living with Fibrodysplasia Ossificans Progressiva (FOP).
Inspired by Sienna, a peer who lives with this ultra-rare condition, swimmers come together to raise awareness, foster understanding, and stand in solidarity with individuals and families affected by rare diseases. The Care for Rare Swim Challenge reflects the collective spirit of the swim community—using teamwork, empathy, and sport to make a meaningful impact.
Join our community in supporting the Care for Rare Fundraiser, benefiting the International FOP Association (IFOPA).
Fibrodysplasia Ossificans Progressiva (FOP) is an ultra-rare genetic condition in which muscle and connective tissue gradually turn into bone, severely limiting mobility. Since its founding in 1988, IFOPA has served as the global leader in funding research, supporting patients and families, and connecting clinicians, researchers, and pharmaceutical partners working toward treatments and a cure.
Thanks to decades of research supported by IFOPA and its partners, the first approved treatment for FOP is now available, representing a historic breakthrough for the community. However, continued funding is essential to expand access, support additional research, and help patients and families navigate this evolving treatment landscape.
Fundraiser Details
Many patients with FOP find great pleasure in swimming and relaxing poolside. Swimming is one of the few approved activities for those with FOP, because there is less risk of severe injury.
The “Care for Rare Swim Challenge” will honor this love of swimming ~ and raise money to fund research through the IFOPA. As part of the “Care for Rare Swim Challenge,” Multiple swim teams will participate in a wet t-shirt swim challenge, wearing #cureFOP t-shirts for the entire swim practice. Swimming with a t-shirt on will make swim practice more difficult, and will symbolically serve as an acknowledgment of the difficulties faced by those living with FOP.
We hope any individual swimmer, or swim team, across the country will participate if interested.
Why This Matters
By participating in the Care for Rare Fundraiser, students will:
- Support cutting-edge medical research and clinical trials
- Help connect families worldwide to trusted resources and care
- Learn firsthand how community action can drive scientific progress and social impact
This event reflects our community values of empathy, leadership, and sustained commitment to making a difference.
The funds raised through the Care for Rare Swim Challenge will support Fibrodysplasia Ossificans Progressiva (FOP) research through the International FOP Association.
The funds raised through the Care for Rare Swim Challenge will support Fibrodysplasia Ossificans Progressiva (FOP) research through the International FOP Association.
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The funds raised through the Care for Rare Swim Challenge will support Fibrodysplasia Ossificans Progressiva (FOP) research through the International FOP Association.
The funds raised through the Care for Rare Swim Challenge will support Fibrodysplasia Ossificans Progressiva (FOP) research through the International FOP Association.