It’s Not Too Late to Support This Cystinosis Foundation!

The Liv-A-Little Foundation is painting the town purple this August in the name of cystinosis awareness!
Cystinosis is a genetic disorder that causes the build-up and crystallization of the amino acid, cystine, in cells of the body. It can cause organ damage, kidney failure, or death if treatment isn’t administered appropriately. To learn more about cystinosis click here.

The Liv-A-Little Foundation is a five-year-old organization, started by the family of a girl named Olivia, who was diagnosed with cystinosis at 18 months. Their goal is to find a cure for the disease, and they are doing so through partnering with the Cystinosis Research Foundation, fundraising and events, and more.

This month in Canada, the Liv-A-Little Foundation friends, family and supporters are raising cystinosis awareness through having people wear purple bows/ribbons. They have even produced specially-made purple t-shirts!

The family asks that those who are supporting the awareness campaign to come down to Port Elgin on August 31st for a big group photo of everyone wearing purple. If you are not in the area, you can support this organization by donating here.

For more information on Paint the Town Purple 2017, including how to participate, check out Bay Shore Broadcasting and the Liv-A-Little Foundation website and Facebook page.

To learn more about cystinosis, check out our partner the Cystinosis Research Network.

Jessica Gladwell

Jessica Gladwell

Jessica Gladwell is one of PW's consultants and patient editors. She has lived with late-stage, chronic Lyme and POTS since circa 2002. She has also served as a caregiver to close family members with late-stage, chronic Lyme. Before diagnosis, she served as a business consultant for a large corporation and PM for a small digital branding agency. Now, she is proactive in the rare and neurological disease community, spreading awareness and advising on matters of health and lifestyle when living with a chronic illness.

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