Next Generation of Cystinosis

08/05/2026

How do you navigate the flare days with gastroparesis? Or cysteamine stomach irritation with cystinosis?

08/05/2026

As always, Patient Worthy continues to share our content and upcoming events. Thank you for the continued support, Patientworthy.com!

ADULT CYSTINOSIS WEBINAR

"BEYOND THE KIDNEYS"

Who Should Attend?

This webinar is intended for adults living with cystinosis, healthcare providers, researchers, and anyone interested in advancing adult cystinosis care.

We hope you'll join us for this important conversation, and we look forward to seeing you there!




[ID: the graphic below uses the colors black and green to frame a white background. The following information is written on top of the white:

Adult Cystinosis Webinar: Beyond the Kidneys

Hosted by Next Generation of Cystinosis

Exploring the recently published article "Addressing the Multisystemic Impacts of Nephropathic Cystinosis in an Adult," by Jeanine R. Jarnes, Rebekah S. Palmer, and Chester B. Whitley.

To confirm your attendance complete our RSVP by scanning the QR code or entering the link:

https://bit.ly/3T20w4X


Webinar Details

Date: Thursday, August 6

Time: 4:00 PM CT

Location: Zoom

☆ Topics of Discussion ☆

• Transitioning from pediatric to adult care

• Gaps in adult cystinosis care

• Psychosocial experiences and quality of life

• Opportunities to improve long-term support and care

Please feel free to share this invitation with your colleagues, healthcare providers or others who may be interested! ]

08/04/2026

Tammy's Gastroparesis story Part 1 is available on YouTube. The link is in te original post on G-PACT (Gastroparesis Patient Association for Cures and Treatments, Inc).

08/04/2026

Thank you National Organization for Rare Disorders, Inc. (NORD) for sharing our upcoming webinar information for this Thursday!

This Thursday, join Next Generation of Cystinosis for their Adult Cystinosis Webinar: Beyond the Kidneys—an important conversation exploring multisystemic impacts of nephropathic cystinosis in adults. RSVP: https://bit.ly/3T20w4X

This webinar will discuss the recently published article by Jeanine R. Jarnes, Rebekah S. Palmer, and Chester B. Whitley, highlighting the need for comprehensive, lifelong care beyond kidney health.

Whether you're an adult living with , a health care provider, researcher, or advocate, your perspective matters. We hope you'll join them for this informative discussion.

08/03/2026

Meet Pace the Sloth, a mascot of G-PACT (Gastroparesis Patient Association for Cures and Treatments, Inc)

"Hi! I'm Pace!"

"Eating looks different with gastroparesis.

I eat slow. I listen to my body. I give myself grace."

"I give myself time. Rushing doesn't work for my body."

"My stomach takes it's time too."

"Small meals help me feel my best."

"Some days are slower than others and that's okay."

Meet Pace the Sloth! 🦥💚
Hope the Panda has a new best friend, and we can’t wait for you to meet her.

Pace is here to remind us that healing doesn’t have to happen on anyone else’s timeline. Some days you’ll move quickly. Other days, simply getting out of bed is a victory. Both count.

She’s here to celebrate our small wins, encourage rest without guilt, and remind our community that moving forward, even slowly is still moving forward.

Because living with gastroparesis isn’t a race. It’s about finding your pace.

Welcome to the G-PACT family, Pace! 🦥💚

08/03/2026

G-PACT (Gastroparesis Patient Association for Cures and Treatments, Inc) has a full schedule this week surrounding life with gastroparesis.

Feel free to join for education and support!

08/03 Meet Pace: GPs newest mascot

08/04 Tammy's Patient Story Part 1

08/05 Spoonful of Spite: Gastroparesis Diet

08/06 Tammy's Patient Story Part 2

08/07 Webinar nutrition for Gastroparesis

Schedule times available here:

https://g-pact.org/events/

Ready, set, GASTROPARESIS AWARENESS!

We’ve got a great week ahead, so stay tuned and make sure to turn notifications on so you don’t miss a thing!

Check out the events page on our website for details: https://g-pact.org/events/

08/01/2026

Gastroparesis can be a secondary condition in folx with cystinosis.

A gastric emptying study on the stomach can be conducted by a gastroenterologist. Typically, a primary doctor orders the initial appointment to gastroenterology.

Our friends at G-PACT (Gastroparesis Patient Association for Cures and Treatments, Inc) will be educating on gastroparesis this month.

Gastroparesis is a life altering diagnosis, and often misunderstood.

It changes your relationship with food, your body, your career, your social life, and your mental health. It can mean living with chronic nausea, pain, malnutrition, dehydration, feeding tubes, medications, frequent hospitalizations, and the uncertainty of never knowing how your body will respond from one day to the next.

Yet behind every diagnosis is a person adapting, advocating, and finding ways to keep moving forward.

This Gastroparesis Awareness Month, we’re looking beyond the name of the disease and making space for the people living with it every single day. Help us raise awareness, encourage research, improve access to care, and bring hope to the millions affected.

Follow along here, and GP Pie Face Challenge for all things all month long.

07/31/2026

"The Americans with Disabilities Act is 36 years old and we still do not have equal rights" - Disabled Hikers

Read Disabled Hikers post below to learn what more we need in public policy for the disabled populations.

Tomorrow, July 26, is the 36th anniversary of the signing of the Americans with Disabilities Act.

There are still a lot of misconceptions about the ADA. The ADA is a civil rights law, not an architectural law or building code, meant to protect the rights of all disabled people to live full, safe lives. In reality, Disabled people still do not have equal rights, full community inclusion, reliable healthcare or care workers, access to education, living wages, the right to marry, and so much more.

The ADA also has no enforcement. Our rights are constantly violated, but our only options are a costly time and energy consuming complaint process or personal lawsuit. The Department of Justice has released multiple memos stating it will not enforce the laws for community inclusion, emotional support animals, and more.

As a civil rights law, the ADA is also constantly under threat. Bills to undercut the ADA are introduced every year - and especially in the past few years, where multiple lawsuits are attempting to declare the ADA unconstitutional, are challenging long standing protections, and critical disability services are being defunded. In the wave of anti civil rights legislation, Disabled people aren't "next" - we are now.

The ADA regulations are also the bare minimums for accessibility. They do not do enough to ensure access for all and are too easy to get around. There have certainly been improvements in the lives of disabled people, but we are still in precarious situations. The ADA is the baseline, it is not the end goal.

While the ADA was a major win fought for by many multiply marginalized disabled people, we have so much more to do to achieve liberation for all.

ID: background photo of a person in a large power chair looking at a mountain landscape. They are on a van lift. Text reads the Americans with Disabilities Act is 36 years old and we still do not have equal civil rights.

07/30/2026

July is specifically claimed as Disability Pride month due to the Americans with Disabilities Act federal civil rights law signed July 26, 1990.

Educating oneself on disability in America can happen anytime of the year.

We have an ever growing book list surrounding disability and rare disease whether it's the content, the author, or the characters!

https://nextgencystinosis.org/book-recommendations/



[ID: the graphic is made by Find Your Own Hope. It includes an image of people using mobility devices and some not.

The text reads:

Disability Pride Month

Why do we have it? Because ableism is heavily ingrained in modern society.

Ableism: assumption that typical abilities are superior/better than disabilites and that people with disabilities are burdensome.

* Note: be aware that unconscious ableism is extremely common ]

07/28/2026

We at Next Generation of Cystinosis are a non-profit co-founded and lead by adults living with cystinosis. Allies who advocate for patient-centered care and support work alongside us.

We feel pride in building community and sharing updated realities in aging with cystinosis.



[ID: The graphic below shows a young Michael J Fox. He was diagnosed in the early 90s with Parkinson disease. He is quoted as saying, "This message is so simple, yet it gets forgotten. The people living with the condition are the experts."]