Next Generation of Cystinosis

01/08/2026

In today’s video, our friend and Registered Psychotherapist, Cheryl Simoens, concludes her presentation on trauma and the body–brain connection with words of comfort and guidance. The following is partially paraphrased.

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“This is not your fault.”
There is a threshold to what any person can endure. When you live the kind of life many of us live, it’s natural to experience what we do—both emotionally and in our brain–body responses.
Self-awareness is key to coping. Community support is a necessity.

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Check out the final video in Cheryl’s series, where she shares important insight, comfort, and practical guidance.

If you have questions for Cheryl, you can reach her at: cheryl@calmprairieskies.com

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Stay tuned next week for the start of a new video series on Medical PTSD for , led by expert Emily Parks, founder of POP Medical PTSD .

01/08/2026

The nationwide (USA) emergency number for mental health or substance abuse crisis is 988.

01/07/2026

🎥 And we’re back! For our first of the year, our friend and Occupational Therapist, Megan Morrill, shares practical guidance on exercise duration, how to know when a workout is too easy or too hard, and the importance of stretching before and after exercise.

If you have any questions for Megan, her contact info is megan@cayatherapies.com

01/05/2026

“It’s okay to rest. It’s okay to say no. It’s okay to struggle. It’s okay to not be okay”.

01/02/2026

Gastroparesis is a secondary diagnosis some people with cystinosis will experience over their lifetime. Next Generation of Cystinosis is finalizing industry collaborators to find specifically what portion of our aging population deals with certain motility health conditions. We hope to support our adults who use TPN and feeding tubes of all kinds to continue doing what they love.

Our upcoming events will be posted soon in peer collaboration with G-PACT (Gastroparesis Patient Association for Cures and Treatments, Inc).

Feeding tube awareness week is February 1-7 2026 and we want to include any adults with cystinosis whether or not digestive conditions are part of your current experience with peers who have differing digestive conditions for encouragement and community. Stay tuned! And give G-PACT a follow!

Below is a graphic posted by our friends at G-PACT letting us know that whatever we can find to eat is a good choice, and it is okay if that changes day-to-day.

Gastroparesis loves a plot twist.
Consistency is optional. Grace is mandatory.

Happy New Year! Here’s to another year of Surviving out of Spite 💚🎉

01/02/2026

Next Generation of Cystinosis operates through the lens of disability justice. This means framework wherein equity is the baseline, not equality. The graphic below shows the difference and reveals why equity and justice are values for our non-profit.

🖤🤍💚🖤🤍💚

[ID: a graphic images using Shel Silverstein style art work to accompany definitions on Inequality, Equality, Equity, and Justice. The artwork is an apple tree and small children for each word and definition.

•Inequality: Unequal access to opportunities.

One child is receiving an apple from the tree and the other child is not.

• Equality: Evenly distributed tools and assistance.

Both children have the same size ladder. One child is tall enough to reach the apples for themselves but the other child has a smaller stature so the ladder does not assist his need to gather apples.

•Equity: Custom tools that identify and address inequality.

The child is given a ladder that appropriately assists them to pick their own apples.

•Justice: Fixing the system to offer equal access to both tools and opportunities.

The tree now has thicker boards on one side and strings on the other side to stabilize it for each small child's basic necessities.

-Зоите фыстан ]

12/29/2025

Anita is the creative autistic human behind the art and tiny hug club at Sugar and Sloth.

Her content brings joy and hope and that's what we want to head into 2026 with these days.

[ID: Sugar & Sloth created this list of reminders to take into 2026 using their charming animal drawings of a dinosaur, octopus, snail, frog, and horse:

☆ Other people's feelings are not my responsibility

☆ Saying "no" is a form of self-respect

☆ Just because I think it, doesn't mean it's true

☆ I don't have to earn rest

☆ I don't need permission to prioritize myself ]

12/24/2025

May this season find you kind to all, including yourself.

See you all in the calendar new year 2026!

🖤🤍💚

[ID: an image from our late peer Kevin McCalla from his former Instagram :

Dry erase marker art of a human handing flowers to their shadow with this conversation:

"Oracle, how can I live forever?" they asked.

"Be difficult to forget,"
the Oracle replied.

"How? Should I create art? Should I be famous? Or powerful?"

"You should be kind."

12/18/2025

In today’s video, our friend and Registered Psychotherapist Cheryl Simoens continues to share about the sympathetic and parasympathetic nervous system and describes "Fawn" and "FIne".

•"Fawn" means to appease or comply with a perceived threat.

•"Fine" is denying or downplaying trauma or effects of trauma

If you have any questions for Cheryl, her contact info is: cheryl@calmprairieskies.com

12/17/2025

🎥 In today’s video, our friend and Occupational Therapist, Megan Morrill, shares information about exercises to help strengthen other parts of the body outside of the hands.

If you have any questions for Megan, her contact info is megan@cayatherapies.com

12/16/2025

Book recommendations featuring knowledge about disability justice and/or by authors with disabilities!

[ID: from our friend Jamie Shields with , the infographic below has snowflakes on the border and book covers for each title and author recommendation. The title is Books to curl up to this Holiday Season:

• Unlearning Ableism by Celia and Jamie (Shields)
• Black and Neurodiverse by Oluseyitan Ojedokum
• Positively Purple by Kate Nash
• The Pretty One by Keah Brown
• Change by Alex and Hayden
• Disability Visibility edited by Alice Wong
• Tip of the ADHD Iceberg by Dr Samantha Hiew
• Mad About Money by Maddy Alexander-Grout
• Loving Our Own Bones by Julia Watts]

12/15/2025

🎧 Disabled and Proud Podcast — “Chronic Illness is Anti-Capitalist” (with Sophie Buck)

This episode names something many of us feel but rarely hear said out loud: chronic illness doesn’t fail capitalism — capitalism fails chronically ill people.

It explores how work systems—not disabled bodies—create burnout, exclusion, and precarity, and why access, flexibility, and boundaries are acts of survival rather than weakness.

A few takeaways that stayed with me:

• Work systems aren’t neutral — they’re built around specific bodies

• Burnout isn’t a personal flaw; it’s often structural

• Productivity isn’t a measure of worth

• Disabled people carry deep, lived expertise about adaptation and survival

If work has ever felt impossible, misaligned, or harmful to your health, this conversation offers language, validation, and clarity.

🎧 Listen when you have the energy. Pause or skip if it’s heavy.
💬 I’d love to hear what resonated for you.

*Content note: The conversation is candid and includes a small amount of explicit language.

https://www.youtube.com/watch?v=VDpYXz_9V0c&list=PLwxBID5vL_baOhVHU7nLXsruv_dvScvQW&index=20

Brooke is chatting with Sophie about being disabled in a capitalist society and why disabled people are so frequently left out of the conversation about work...