Welcome to Next Generation of Cystinosis
Next Generation of Cystinosis is a non-profit volunteer-run organization founded in 2019 and incorporated in 2020. Our vision is to be an organization run by and for adults 18 years and older affected by cystinosis. Our mission is to have open and honest dialogue about the plethora of issues that affect them.
Emotional Support
**Update on Living with Cystinosis Support Group:The following image is provided below as many of our followers are familiar with these emotional/mental health services.
Next Generation of Cystinosis has partnered with Center for Chronic Illness since March 2020 of the first pandemic wave which brought the world, and particularly the rare and disabled communities, into more isolation.
Unfortunately, the funding for the cystinosis groups has run out after 4 years. This private group will no longer be available to us.
However, we have options:
1. One could still access the platform HeyPeers and register for the general session of Living with Rare Diseases or any of the other minority groups you identify with in regard to continued free emotional/mental health support.
https://www.heypeers.com/users/sign_in
As we know, many cystinosis humans live with other diseases and like every human are comprised of multiple identities such as race, parenthood status, sexuality, and gender.
2. Planning ahead for later into the year is an ongoing agenda item with Next Generation of Cystinosis and we also hope to have another emotional/mental support offering in the future. Be safe. Be well. Kerry Heckman can still be contacted in regard to the Living with Rare Diseases support group.💚💚💚💚
Covid-19
Many adults with cystinosis have unique concerns regarding the current pandemic. The pediatric and parent communities have received wise medical advice that we respect and heed; however, we (Rebekah Palmer and Jessica Britt Jondle) also wanted to seek out the wisdom of a doctor specializing in adult needs. (Covid-19)
View Dr. Richard H. Simon’s full statement.
[Image Description: Cystinosis and COVID 19 “People with cystinosis and significant respiratory muscle weakness who develop pneumonia during COVID-19 have a greater risk of needing intensive care unit treatment and breathing assistance with mechanical ventilation than if their respiratory muscles were strong” Dr. Richard H. Simon, MD Pulmonary and Critical Care Medicine Division University of Michigan Medical School]
Join us
We are here to support you. We know cystinosis can be a struggle and you are not in it alone. Sign up here to become a member and receive updates from us and view our upcoming newsletter.
Next Generation of Cystinosis 