Next Generation of Cystinosis

09/06/2026

We are a majority-led by folx with cystinosis non profit that centers the needs of adults with cystinosis. We are all volunteer-led. We include allies on our board.

Funds we receive go directly to organizational costs, peer events, peer needs (like groceries and basic care items), and education and research projects focusing informed reality of aging with cystinosis.

Consider donating to us!

https://nextgencystinosis.org/our-donors/



[ID: The Next Generation of Cystinosis logo is on a white background with a solid black circle centered with the capitalized initials NGC in the circle. Two solid black lines curve around the solid black circle in between the bold, capitalized words in black "Next Generation" and lighter, black capitalized words "Of Cystinosis.]

09/03/2026

As cystinosis progresses, what we were capable of doing as children and teenagers changes quickly or by slow increments depending on the variation of cystinosis we have.

Reframing how we talk to children and teenagers who will grow to be adults living with rare disease is imperative to healthy acceptance of living rare.

Natural aging does inhibit what a body once young can accomplish. With cystinosis, we will experience the effects of aging at earlier times than our peers.



[ID: the first graphic reads "Internalised ableism can make a person feel like they...."

• Are less than
• Aren't as capable
• Are undeserving
• Are a burden
• Shouldn't speak up
• Must prove their worth
• Should hide their needs
• Don't belong
• Shouldn't ask for help
• Are failing if need support
• Must push through pain
• Will never be enough

There are colorful images of people using various mobility devices and expressing frustration above each feeling.

Graphic created by Jamie Shields with DisabledBySociety.

The second graphic is a post from fullyarticulategoldskeleton:

"Instead of telling disabled kids 'you can do anything you want if you put your mind to it,' I think we should tell them, 'the things you are capable of doing matter'.

A person can't live on an increasingly strained hope that someday they'll be good enough, especially if all you ever do is tell them who they are now and what they do now is worthless."]

08/31/2026

There will be a special session at this year's WORLDFair titled "Siblings At The Center: The Emotional Weight Families Carry".

Who Should Attend?

• Individuals living with lysosomal diseases

• Family members, friends, and caregivers

• Healthcare providers and researchers

• Advocacy organizations

• Pharmaceutical and industry representatives

• Anyone interested in learning more about lysosomal disease care and research

Register for in-person or virtual here:

www.WORLDFair.health



[ID: below is a photo of wildflowers in purple and yellow]

08/27/2026

Want to volunteer with us?

Let us know!

We are in the work of providing support for adults with cystinosis by activities, events, and literature centered around life as an adult with cystinosis; collaboration among rare disease community; and updating medical information and lifestyles as we age with cystinosis.



[ID: the graphic below has a green background with the Next Generation of Cystinosis logo in the top left corner. It announces "The NGC Board is in Search Of:"

And includes the two board positions in bullet points:

• Vice President of Advocacy and Education

• Secretary

The contact information reads:

Interested persons can email their resume or interview request to Steve Schleuder at [email protected]

There are images of 5 people holding up their arms and shaping their hands like hearts above their heads.]

08/26/2026

WORLDFair.health to register!

WORLDFair 2026 hosted by Dr. Jeanine Jarnes with University of MN Fairview in Chaskin, MN at the University of Minnesota Landscape Arboretum is September 18, 2026.

Meetings are from 9:30 am to 4pm CST.

Lysosomal disease states represented will be:

Cystinosis
Fabry
Gaucher
Pompe
MPS

Alpha-Mannosidosis
Krabbe
Metachromatic Leukodystrophy
Niemann-Pick Type B



[ID: the picture below is from a WORLDFAIR event a few years ago and features Sara Healy, Jana Healy, Shawn Reuter, and Rebekah Palmer.]

08/25/2026

Our friends with G-PACT (Gastroparesis Patient Association for Cures and Treatments, Inc) are hosting Chronically Dating: Real Talk on Love, Relationships, and Life with Chronic Illness.

Featuring Sarah Bellah and Samantha Sauer with GPact and Jacqueline Child, Cofounder of Dateability.

Please register for this conversation taking place on Thursday, August 27 at noon central to join this discussion!

Join us for a live Q&A conversation around Dating with Gastroparesis & Chronic Illness as we have an honest conversation about relationships, vulnerability, connection and what it means to navigate dating life while chronically ill.

Register here: https://us06web.zoom.us/meeting/register/afj2mfGVStGFGXfjDD5Oww

08/18/2026

Next Generation of Cystinosis was co-founded by Mika Covington and Author Rebekah Palmer in 2019 with 501 c3 status in 2021.

Mika led as president from 2019 to 2024.

Tahnie Woodward led as president from 2024 to 2025.

Steve Schleuder is currently president since Jamuary 2026.

Our nonprofit is volunteer and majority-led by people living with cystinosis and rare disease.

We encourage allies who believe our cause and mission [to center the lived experience of adults with cystinosis] to join our work.

Read about our current leadership, board and advisory members:

https://nextgencystinosis.org/about-us/our-leadership/

Any questions about working with us: please drop a comment or message!



[ID: below are the headshots of former and current president of NGC: Mika, Tahnie, and Steve and current professional advisor Rebekah.]

08/09/2026

Learn about variations within a cystinosis diagnosis and how the specifics of genetic coding determine which kind of cystinosis is carried in families.

Ask questions about testing and insurance coverage.

Caroline Brown, a genetics counselor working at Fairview University in Minnesota, will be giving a 30 to 40 minute educative session and looks forward to speaking with our community!



[ID: A green background with the Next Generation of Cystinosis logo in the top left corner reads the following announcement:

Genetics and Cystinois
Carrier Status and Diagnosed Status
Each Family Has A Unique Variation
With Caroline Brown, MS, CGC
Genetic Counseling
M Health Fairview

Saturday, August 22, 2026
1 pm Pacific
2 pm Mountain
3 pm Central
4 pm Eastern

www.nextgencystinosis.org

There are images of air horns on opposite corners.

A picture of our genetics counselor, Caroline Brown, is next to the time zones. Caroline is a woman with short brown hair and blue eyes.]

08/09/2026

Managing Gastroparesis Safely: Medication Risks, Tardive Dyskinesia, and Treatment Options

Hosted by G-PACT (Gastroparesis Patient Association for Cures and Treatments, Inc)

link to register in original post

Another webinar?! You bet!

Our next webinar is on 8/11 at 1pm EST/10am PST. We’re discussing medication risks, and an overview of the commonly used medications for . You’ll hear about important safety considerations and explore the potential risk of tardive dyskinesia, a rare but serious movement disorder associated with certain medications.

Link to register: https://us06web.zoom.us/meeting/register/_XIQBGMdQBaO9Vva5amAXQ

08/06/2026

Optimizing meals with delayed gastric emptying: Gastroparesis nutrition tomorrow at 1pm EST!

Practical tips will be given on: meal timing, choosing food textures, as well as when to drink liquids vs solids to support nutrition while living with GP.

Register here:
https://us06web.zoom.us/meeting/register/noapxzT9SEmVAu8-YoKw-Q

Speaking of month, we’ve got a great educational webinar this FRIDAY at 1pm EST!

During this session, you will hear practical tips on meal timing, choosing food textures, and other tips such as when to drink liquids vs solids to support nutrition while living with GP.

Register here: https://us06web.zoom.us/meeting/register/noapxzT9SEmVAu8-YoKw-Q