Our Founders

Mika Covington and Rebekah Palmer were both a part of the now dissolved Future By Design advocacy group first established by their peers with Cystinosis and funded by the Cystinosis Research Network. We appreciated the concept started by those peers, Aimee Adelmann and Jenn Loglisci, for cystinotic adults to impact their future with rare disease. We started our non-profit based on what Adelmann and Loglisci formed.

Our mission originated fully geared to centering cystinotic adult narratives regarding accurate, updated, and inclusive sex and reproductive education; inclusive medical care; as well as trauma informed emotional and mental health support. Next Generation of Cystinosis became an independent organization majority-led by cystinotic adults in 2019 and became a registered 501 c3 non-profit in 2021 in Iowa.

Our first partners were Patient Worthy and National Organization for Rare Disorders, Inc. (NORD) . In 2024, our bylaws/constitution changed to reflect the rare adult reality in the broader rare and lysosomal disorder community by stating our board must be comprised of and majority-led by humans with rare disease instead of specific to majority humans with cystinosis.

We continue to be influenced by historical and current movements inside disability justice spaces and the social model of disability. We want to continue focusing our programming for all adults with cystinosis and rare disease ages 18+, and specifically continuing support for the emerging and growing group of 35+ middle-aged adult populations within all rare disease spaces.

Official announcements for NGC:

° https://cystinosisociety.wordpress.com/2019/11/06/cystinosis-in-the-world/ [November 2019]

° https://patientworthy.com/2020/07/03/this-is-my-struggle-cystinosis/ [July 2020]

° https://cystinosisociety.wordpress.com/2019/04/04/cystinosis-is-a-lysosomal-disease/