Next Generation of Cystinosis

06/11/2026

I am a mashed potato, the mashed potato is me.

06/11/2026

It’s not emotional distance, it’s energy depletion.

Art by ~ begonepots

06/10/2026

06/09/2026

Sometimes our internal operating system decides to stay stuck in permanent reboot mode for the day… 💻🔄

(Status: buffering.)

Brain fog doesn’t care that you have plans and things to do.

For people living with chronic illness or disability, brain fog isn’t just a metaphor—it’s a real shift in cognitive speed, focus, and working memory that doesn’t really care about deadlines, calendars, or plans you made earlier when your brain was cooperating.

And yet, most work environments (especially in nonprofit and creative spaces) are still built around the assumption that people can operate at a consistent, high-output pace all the time.

That mismatch is where accessibility either shows up—or doesn’t.

Sometimes “performing at 100% every day” isn’t possible. What matters more is building systems (and expectations) that can flex when capacity changes.

Progress still counts. Even when everything is running a little slower than usual.

If you deal with brain fog too, or support people who do—how do you navigate it in real life, not just in theory?

06/07/2026

Like our partners in advocacy surrounding peer support, G-PACT (Gastroparesis Patient Association for Cures and Treatments, Inc), we also see Pride month as a time to center how a minority identity affects managing healthcare. And we as an organization support our trans and nonbinary community all year long.

From basic reproductive health options to having one's name correctly on pharmacy prescriptions and patient care forms in clinic, LGBTQ folx with rare diseases often experience barriers to managing their health that the majority population does not encounter.

We recommend the anthology Trans and Disabled edited by Alex Iantaffi to educate oneself about trans people's experiences with disability and healthcare.



[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.]

06/07/2026

Today, we celebrate the incredible gift of life made possible through organ, eye, and tissue donation.

World Transplant Day is a time to honor the donors who gave selflessly, the donor families who said yes during some of life's most difficult moments.

Every transplant represents hope. It means more birthdays, more family gatherings, more adventures, and more opportunities to live life fully.

It is also a reminder that thousands of people are still waiting for a lifesaving transplant. By registering as an organ, eye, and tissue donor and sharing your decision with your loved ones, you can help create hope for those waiting.

This World Transplant Day, we celebrate the connections, second chances, and renewed futures that donation makes possible.

Learn more or register your decision today:
https://www.donatelifenw.org/content/register-now

06/04/2026

Image description: A screenshot of a social media post by “Misa on Wheels” () appears against a muted purple background. The post reads: “A house will not be a ‘forever home’ if accessibility is not considered when building it.”

Below the text is a photograph of the front porch of a house. The porch is elevated above the driveway and features both a short set of stairs and an integrated accessibility ramp leading up to the entrance. White railings line the ramp and porch, while several white support columns hold up the covered roof. Brown siding and trim contrast with the white architectural elements. Fallen autumn leaves are scattered across the dark driveway and ramp, and trees and greenery are visible in the background.