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Cystinosis Awareness Day 2019

Tuesday, May, 07, 2019

Our worldwide community will honor Cystinosis Awareness Day on May 7 (5/7). May 7th represents the most common cystinosis mutation: 57-kb deletion. In the short time since inception, our small community has proven it’s might – catching the attention of law makers and Emmy-award winning film crews. Awareness efforts have transcended borders and oceans, uniting over 20 countries for one common cause – to find a cure for this unforgiving disease.

You too can be a part of this movement!

  • EDUCATE others by sharing personal experiences and factual information about cystinosis
  • ADVOCATE on behalf of yourself and the collective cystinosis family at each event and doctor’s appointment, with school staff and employers
  • SUPPORT one another by checking in on friends with cystinosis; join groups to meet new people who may provide comfort to you
  • HELP FUND RESEARCH by starting your own fundraiser, promoting an existing event or donating

Visit our How to Help page for additional ways to get started.

Efforts from 2018 are outlined within our Inspirational Stories and continue to have an impact. The 2019 festivities kicked off with CRN President, Clinton Moore, announcing he’d try to walk another 57 Miles for Cystinosis within 24 hours. The previous year’s attempt fell short on time but the team is more focused than ever. *UPDATE* Photo gallery from the 57 Miles for Cystinosis event now available here.

Since the announcement, he has joined forces with the new Adult Leadership Advisory Board (ALAB). Those adults living with cystinosis and friends will walk/run/hike/bike a collective 57 miles as well. Check in on their progress via the Facebook event.

Check back for updates and access real-time news on our social channels.

Thank you for supporting our community!