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Cystinosis Awareness Day – 2021

May 7

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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 has become a highly anticipated event. Each year we uncover ways to promote understanding within our personal networks and beyond. Cystinosis Awareness Day has also proven to be a successful fundraising initiative.

We’d appreciate your help this May 7th. Please consider participating in one or more of the ways outlined below. We are small but together we are mighty!

Raise Funds 

Your donations fuel educational and support programming and cystinosis research. We are currently funding cystinosis studies over a range of areas. This includes male reproduction, cognitive function, measuring the effectiveness of cystine therapy, and more. Visit our Grants Awarded page to learn more.

For the 4th Annual Cystinosis Awareness Day, your hard earned dollars will go 4x as far. We’ve secured donors ready to match your contribution! For example: a $5 donation turns into $20, $57 becomes $228, or $100 translates to $400. Donations will be matched up to $5,700 (that’s $22,800 for our community!) Click here to donate.

Show your love for the Miles for Moose 5.7 mile walk. Moose is a growing little boy with an amazing “nana” who has been putting together this fundraising event in his honor prior to the COVID-19 pandemic. Show your support by registering here

Raise Awareness 

Let’s eliminate those misconceptions about cystinosis. This is the time to break the stigmas and bust down any myths you may have encountered.

MYTH: Cystinosis journeys are all the same.

MYTH: A kidney transplant will cure cystinosis.

MYTH: I am defined by my disease.

If you are ready to help this myth busting mission, start sharing today. This can be as small as a conversation with yourself/a loved one or a bit larger like sharing with your network of social media followers using #cystinosisaware. Follow the Cystinosis Research Network for ideas and ways to have your “myth” featured for Cystinosis Awareness Day. (Links to CRN social channels found in the icons at the bottom of the page)

The Adult Leadership Advisory Board, our umbrella group with a membership made entirely of adults living with cystinosis, has launched a “Succeeding with Cystinosis” campaign for Cystinosis Awareness Day. They’ve challenged the community to search for the successes and failures we’ve experienced within the last year and to share with the group by emailing Sara at shealy194@hotmail.com.

Thank you for continuing to fight for our cystinosis warriors, this May 7th and every day!

 

Organizer

Cystinosis Research Network
Phone:
847-735-0471
Email:
info@cystinosis.org
Website:
cystinosis.org