Next Generation of Cystinosis

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."]

07/24/2026

Recording ongoing health progression on paperwork for financial assistance, food, housing, and medical accomodations take time and official acceptance by various government safety nets for the disabled population.

In the meantime, support from family and community is imperative for our quality of life. Equity among the neighborhood village is how humans feel belonging.

We want to live in a country that values all human lives. Educate yourself on



[ID: this borrowed graphic shows two humans: one with a supply backpack pulling the other out of a hole in the ground. The anecdote written is as follows....

"A person with a chronic illness fell in a hole...

Doctor: Can you keep a symptom diary down there? Also, have you tried pacing?

Benefits assessor: Please provide evidence that you're still in the hole. Again. On this form.

Family member: But you looked fine yesterday?

Wellness Influencer: Cut gluten, sugar, dairy, joy. Heal your gut.

Another chronically ill person: I'm here. I'll climb down. I know this hole. I've brought snacks, a charger, and zero judgment. We'll rest when you need to".]

07/20/2026

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! ]

07/19/2026

Hello adults with cystinosis!

We are excited to establish a virtual support group for any adult peers wanting to connect with each other.

Please join us on Sunday, August 16, 2026 at 7pm CST.

Conversations are not to be a substitute for professional medical advice or clinical therapy.

Conversations are private between peers with rare disease.

Comment below for the link to join!



[ID: the graphic is on a white background with green edging that looks like the folded paper art, origami. The information relayed on the graphic is as follows:

Bi-Monthly Virtual Cystinosis Support Group

Third Sundays every-other month moderated by Next Generation of Cystinosis

Starting June 21 at 5pm PST/ 6pm MST/ 7pm CST/8 pm EST

Comment below for the zoom link]

07/17/2026

Why do we celebrate Disability Pride?

Because it is complex in the reality of living with disabilities.




[ID: graphic from Chronic Love Club and LacieLaJoie titled Feelings That Can Co-Exist. They are wirtten in two pastel colors overlapping each pair.

• Angry about a diagnosis + happy about a diagnosis

• Skeptical about new treatment + hopefully about new treatment

• Sad to be in this position + joy for others in the chronic community

• Feeling conflicted + finding acceptance

• Wanting to give up + wanting to get better

• Medically burnt out + wanting to maintain management ]

07/15/2026

The complexity of working with a rare disease like cystinosis: two women's perspectives written May 2020.

“I can’t prove I’ve ever been discriminated against in the workplace, but I can feel it. Because my voice started becoming softer due to disease, as well as my short height and small presence in the room, I was different than the person they usually picked for certain job promotions.”

source: pixabay.com Interviewing Your Future Self Post author:Patient Worthy Contributor Post published:May 1, 2020 Post category:Cystinosis Because I will be looking for a job from a rare but certainly not unique place of being, I decided to reach out to a mentor who lives with the same disease as....

07/14/2026

Reasonable accomodations for qualified individuals are a federal right in work places with 15 or more employees according to the Americans with Disabilities Act (1990).

If the population of working disabled people is to be retained and hired, accommodations are necessary and reasonable.

** working disabled: those who have disability of varying symptoms that do allow part time or full time jobs including the temporarily disabled due to recovering accidents or remission of terminal illnesses or recoveries from solid organ and stem cell transplants **

** the ADA is in need of more expansive coverage for the working disabled **



[ID: Misa On Wheels shares:

Cutting benefits does not make disabled people able to work.

Removing remote work does not make disabled people able to work.

Accommodating people's needs does however allow more disabled people to work and thrive.]

07/14/2026

Maybe emotional support kittens in the lab would be good. 🥰

[ID: cartoon from off the mark .com by Mark Parisi shows a male patient in a hospital bed. His nurse is holding a kitten. She tells her patient "We draw blood using an all-natural method"...]

07/10/2026

Update on our webinar "Beyond the Kidneys" and a note from our partners Engage Health Inc. :

** See new poll for date change availability **

“Thank you all for the great response! I'm excited that so many of you are interested and able to join us for the Adult Cystinosis Webinar: Beyond the Kidneys!

July has been a busy month for many, so we're hoping that moving the webinar back to the first week of August will give us ample time for recruitment for the webinar. The extra time will also allow our Community Insights Study sponsor to finalize a few remaining details, helping ensure a smooth transition into the kick-off of the study.

When you have a moment, we'd really appreciate it if you could complete the revised scheduling poll below. Thanks again for your time and support and we're looking forward to seeing you at the webinar!”



Poll link:

By GB

07/10/2026

Why do we celebrate Disability Pride?

Because employers are still legally allowed to pay their employees with disabilities lower than minimum wage.

Because the Americans with Disabilities Act signed on July 26, 1990 contends discrimination of disabled employees at work should be prohibited, and yet....
...employees with disabilities who have done the work get passed over for promotions or don't get hired due to disclosure of medical conditions.

The very real threat of job loss and healthcare insurance loss will have many disabled persons who can pass as able-bodied choose to not disclose work accomodations for their disabilities.



[ID: Liberal Jane Illustration created this graphic with a green background. The phrase "Before 1990...." is above a woman of color in business clothing. She has an eye patch over one eye and uses oxygen. Below her is the rest of the sentence " employers could refuse to hire someone because of their disability".]