Next Generation of Cystinosis’ purpose is to provide social support, emotional and psychological support, and medical and scientific education on cystinosis in adults, and to lobby for the interests of those affected by cystinosis.
Unfortunately, there is no organization within the rare disease community that specifically addresses the needs of adults living with cystinosis. However, there are two organizations in the United States that do provide support for parents and families of children with cystinosis.
Therefore, several adults living with cystinosis and I decided to build a new organization for the cystinosis community, called the Next Generation of Cystinosis.
Our organization is new, but we are registered in the State of Iowa as a non-profit, and we have an Employer Identification Number and we do have a bank account.
To cover start-up costs for the organization and help meet the goals above, we are raising $2,000.
These funds will be used to help cover the following:
501 c 4 filing fee
Face-to-Face Board Meetings 1x yearly
Face-to-Face Adult Cystinosis Conference 1x yearly
Peer-to-Peer Support Programs
Thank you for your support!
It is our policy to provide programs, education, and advocacy without discrimination against or harassment of, any person on the basis of age, ancestry, color, creed, national origin, race, religion, marital status, sex, sexual orientation, gender, gender expression, gender identity, physical attributes, physical or mental ability or disability, political party preference, political belief, socioeconomic status, and familial status.
- Kathryn Devanny
- Jennifer Caughlin
- Rose Covington
- Bob Dean
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