Next Generation of Cystinosis

11/03/2025

Many rare disease organizations offer assistance with specfically medical costs.

When an adult lives with cystinosis, often the assistance needed is for basic living requirements.

During this time of food instability and the results this can have on emotional well-being and mental health, we'd like to assist and provide another way of access to nutrition in body and mind for our peers.

This is our holiday funding and Giving Tuesday campaign.

💚 Our Donate link can be found here, under the phrase "Want to contribute to our work"?

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

🖤 Another donation option is through Facebook. We are a current 501 c3 organization.



[ID: the infographic below is divided into two sides. The left side has a background image of a human holding a woven basket with colorful green, orange, yellow, and red vegetables inside. The text over the image states:

Nourish Hope This Giving Tuesday

Adults living with cystinosis are facing rising food costs and isolation--but you can make a real difference

This Giving Tuesday, your gift provides:

Grocery gift cards to ensure no one goes hungry

Support group access for emotional care and community connection

The right side has a blue background with the breakdown of donation amounts and what they purchase inside white rectangles. The following details state:

Every Donation Counts:

$75= 1 grocery card

$100= groceries + support group session for one adult

$400= multiple adults supported

$600= sustain our adult wellness fund

"With food prices rising and SNAP benefits on hold, many adults with cystinosis struggle to afford basic groceries. Your gift brings hope, nourishment, and stability."

Donate Today

Help Us Feed Both Body And Spirit

From Next Generation of Cystinosis ]

11/02/2025

It's Disability History Month in the UK.

Here's our very own Millie Clare and her Human Beauty campaign for this month!

11/01/2025

Tonight at 7pm eastern/6pm central our friend and rare disease peer who also specializes in behavioral health,patient advocacy, and trauma-informed medical education will give a presentation to adults with cystinosis on . Her name is Emily Parks and she founded POP Medical PTSD .

Caregivers and adults who live with an adult with cystinosis can tune into the same presentation on Saturday, November 15 at 7pm eastern/6pm central!

Join a presentation with expert Emily Parks (founder of POP Medical PTSD ) about Medical PTSD with practice tools and approaches to manage it and work with your medical team to honor your unique needs!

Emily Parks will provide the Medical PTSD session twice for different audiences.

💚 The first date is for adults with cystinosis 18+ on

November 1st
At
7 pm Eastern
6 pm Central
5 pm Mountain
4 pm Pacific

💚 The second date is for caregivers and parents of adults with cystinosis age 18+ on

November 15
At
7 pm Eastern
6 pm Central
5 pm Mountain
4 pm Pacific

💫 Please leave a comment “Link” if you would like the link to join either session! 💫



[ID: Emily is a white woman with short, red hair. With her head turned to the side, a bright burst of glee is breaking across her face.
She is wearing a black suit jacket and long, red feather earrings from her ears.]

10/31/2025

Emotional and mental health support while living into adulthood with a rare disease is imperative for quality of life.

Our friend Jamie Shields of Disabled by Society, who is on LinkedIn, details great points about surviving childhood medical complications because we do have added struggles in adulthood within the systems of the countries we are part of community.



[ID: graphic below from Disabled By Society shows cobwebs along the boarder along with images of the classic Halloween ghost: flowing white sheet and eye holes in poses with the following list.....

The title is

It's scary having too:

• continually advocate

• justify your access

• prove your disability

• rely on others to listen

• question the inaccessible

• fight for basic inclusion

• ask for support

• speak up against ableism

• manage others discomfort

• keep fighting to exist

• explain your needs

• keep fighting the system ]

10/27/2025

Missed Cheryl's session at July's Cystinosis Research Network conference?

She will be educating her research on trauma and the brain tomorrow, Tuesday October 28th at 6pm Eastern, 5pm Central, 4pm Mountain, and 3pm Pacific.

Cheryl is a counseling psychologist and has lived experience with cystinosis!

Let us know if you'd like the zoom link to attend.





[ID: the graphic below is a slide from Cheryl's presentation noting the title of her session: Brain and Body Connection: Trauma and Life With Cystinosis presented by Cheryl Simoens, MA CCC. The slide is dark blue. A graphic of the shape of a brain lit up with yellow and red light is positioned in a white circle.]

10/22/2025

Friday, November 14, 2025 Kerry Heckman will join us again at 7pm eastern, 6pm central, 5pm mountain, and 4pm pacific for a peer-to-peer emotional support group organizing session.

The session will be similar to her moderating of adults with cystinosis on the HeyPeers platform with Center for Chronic Illness. She will be including tips on how to structure our own moderation of peer-to-peer sessions and support.

Bring yourself and your adult friends with cystinosis!



[ID: Kerry Heckman (she/her) has long and dark blonde hair with hazel eyes. She is wearing a dark blue top with tiny orange, white, pink, and lighter blue flowers. She is smiling into the camera. She is a licensed clinical social worker with a Master's in Social Work from Loyola University Chicago.]

10/22/2025

Cystinosis Foundation UK has announced a grant that will fund clinical trials for a new treatment for humans with cystinosis: CF-10. This research began before covid by Dr. Roz Anderson. She spent years wanting a drug available that wasn't harsh like cysteamine.

We have hopes CF-10 will become an option in the future! 💚🤍🖤

Cystinosis Foundation UK are hugely excited to announce the next stage in the progress of CF-10, the pro drug that could be a game-changer in the treatment of cystinosis.
https://www.cystinosis.org.uk/news/cystinosis-foundation-uk-celebrates-major-milestone-3-9-million-award-to-advance-ground-breaking-treatment-into-clinical-trials/
University of Sunderland Metabolic Support UK Genetic Alliance UK

10/20/2025

Join a presentation with expert Emily Parks (founder of POP Medical PTSD ) about Medical PTSD with practice tools and approaches to manage it and work with your medical team to honor your unique needs!

Emily Parks will provide the Medical PTSD session twice for different audiences.

💚 The first date is for adults with cystinosis 18+ on

November 1st
At
7 pm Eastern
6 pm Central
5 pm Mountain
4 pm Pacific

💚 The second date is for caregivers and parents of adults with cystinosis age 18+ on

November 15
At
7 pm Eastern
6 pm Central
5 pm Mountain
4 pm Pacific

💫 Please leave a comment “Link” if you would like the link to join either session! 💫



[ID: Emily is a white woman with short, red hair. With her head turned to the side, a bright burst of glee is breaking across her face.
She is wearing a black suit jacket and long, red feather earrings from her ears.]

10/15/2025

Join us for a session with counseling psychologist and adult with cystinosis, Cheryl Simoens, on Tuesday October 28th at 6pm Eastern, 5pm Central, 4pm Mountain, and 3pm Pacific.

Cheryl will be presenting on trauma associated with the diagnosis of cystinosis and it's ongoing progressions. She made this presentation at the Cystinosis Research Network conference earlier this summer.

Let us know if you'd like the zoom link to attend!





[ID: the graphic below is a slide from Cheryl's presentation noting the title of her session: Brain and Body Connection: Trauma and Life With Cystinosis presented by Cheryl Simoens, MA CCC. The slide is dark blue. A graphic of the shape of a brain lit up with yellow and red light is positioned in a white circle.]

10/14/2025

Join Author Amanda Leigh and Author Jessica VanderWerff as they host a writing session delving into all ghoulish and creepy-scary feelings for adults with cystinosis!

















[ID: The graphic below is a black background. Images of a ghost, pumpkin, white cat in a pumpkin costume, and red-gold leaf are placed beside each sentence of the following text in white, capatilized letters:

"FREE INTERACTIVE WRITING

WORKSHOP - SPOOKY THEMED

FOR ADULTS LIVING WITH CYSTINOSIS WHO ARE 18+

Friday October 24th 3 p.m. EST/2 p.m. CST/1 p.m. MST/ 12 p.m. PST

Hosted by Next Generation of Cystinosis " ]