Next Generation of Cystinosis

10/22/2026

Your Experience Can Make a Difference ✨

“Living with Cystinosis as an Adult Community Insights Study," sponsored by Next Generation Cystinosis, will aim to improve the understanding of the lived experience and disease burden of adults living with cystinosis by characterizing relevant physical, emotional, and psychosocial outcomes.

If you are 18+, living with cystinosis and interested in helping the scientific community understand the REAL cystinosis experience, click the link below to learn more:
https://tinyurl.com/NGCResearch

⏱️ Survey/Interview length: 60-90 min
💵 $200 honoraria provided at completion
📄 Must provide disease documentation

10/20/2026

Hello!

We are Next Generation of Cystinosis. Two women with cystinosis, Mika Covington and Rebekah Palmer, created NGC to specifically center support and education surrounding the lived experience of adults with cystinosis.

We have been around for 7 years. We are a 501 c3 organization.

We have been active in the work of complementing what family organizations already offer for caregivers and their children living with cystinosis.

☆ See more about our founders story here:

https://nextgencystinosis.org/our-founders/

☆ Our mission:

Next Generation of Cystinosis (Next-Gen Cystinosis) is a nonprofit volunteer-run organization.

Next-Gen Cystinosis’s mission is to create safe spaces for adults 18 years and older affected by cystinosis to engage in open and honest dialogue about the plethora of issues that affect them.

☆ Next-Gen Cystinosis’s purpose is to....

● provide adults 18 years and older affected by cystinosis support in dealing with the issues and concerns that specifically affect them.

● to provide emotional and psychological support and education.

● to provide evidence-based, medically accurate sexual and reproductive health education.

● to provide guidance on where to find information and resources to adults affected by cystinosis.

[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".]

The current NGC logo was designed by another adult woman living with cystinosis, Tahnie Woodward.]

10/16/2026

Are you or someone you know an adult living with cystinosis?

Next Generation of Cystinosis (NGC) has partnered with Engage Health to launch the Living with Cystinosis as an Adult: Community Insights Study.

Currently seeking U.S. participants at this time. This study aims to better understand the lived experiences, daily physical and emotional impacts, and unmet needs of adult patients to ensure community priorities are well represented.

Who Can Participate?
Adults aged 18 years or older diagnosed with cystinosis.

Able to read, write, and communicate in English.

Willing to complete a 20–30 minute web-based survey and a 60–90 minute phone interview.

Able to grant informed consent and provide documentation of disease (or consent to support organization attestation).

Compensation & Details:
Eligible participants will receive a $200 honorarium check following completion.

Flexible interview scheduling is available, including times outside standard business hours.

👉 How to Join:
Click the link to complete your RSVP and select your available times: https://tinyurl.com/NGCResearch

If you have questions or need assistance registering, call Engage Health at 651-994-0510.

Please feel free to share this post with others in the cystinosis community!



[ID: the graphic uses the colors black and green to frame a white background. The following information is written on top of the white:
Living with Cystinosis as an Adult: Community Insights Study
Sponsored by Next Generation of Cystinosis
Improving the understanding of the lived experience and disease burden of adults living with cystinosis by characterizing relevant physical, emotional, and psychosocial outcomes.
To be eligible for this study you must:
Be 18 years or older diagnosed with cystinosis
Be able to read, write, and communicate in English
Grant informed consent
Complete a RSVP/survey and interview (approximately 60-90 minutes)
Provide documentation of disease
If you would like to participate in the research interviews please:
Scan the QR code or enter the link in your browser to RSVP with dates and times that you are available.
A $200 honoraria will be provided to eligible participants following study completion.]

10/14/2026

Seven years ago, on this day, Next Generation of Cystinosis was created.



From our co-founder Mika Covington on October 14, 2019:

" Have you ever felt lost, isolated, sad and depressed? Are you struggling to live your fullest life?

I know I have, and I am.

I have felt lost because of living with the unknowns of an ultra-rare chronic disease. Specifically, I am charting a new course in the life journey of a cystinosis patient. I am part of the first generation of cystinosis patients to live into adulthood. I have no idea what lies ahead for me. What I do know is that the ultimate path of cystinosis is death and with death the unknown of what comes after.

https://mikacovington.com/2019/10/14/next-generation-of-cystinosis/ "

Have you ever felt lost, isolated, sad and depressed? Are you struggling to live your fullest life? I know have, and I am. My name is Mika Jayne Covington. I am 28 years old. I am a transgender wom…

10/12/2026

Hello adults with cystinosis!
Our next virtual support group for any adult peers wanting to connect with each other is coming up this Sunday.

Please join us this Sunday, October 18, 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]

10/12/2026

The following obituary is posted on Lincoln Ridgeway's Facebook timeline from his brother. Lincoln supported families and peers with cystinosis.

"Lincoln Mitchell Ridgeway was born February 5th, 1980 in South Minneapolis. Lincoln passed away September 13th, 2026 at the age of 46 at his home.
Proceeded in death by his father Daniel, Grandparents Richard and Sharon Goth, Dewey and Mable Ridgeway, Aunts and Uncles.
Survived by his loving Mother Gwendolyn, brother Lucas, Aunts, Uncles, and Cousins.

Lincoln attended C**n Rapids High School. He worked as a Plater at Spec Plating until he stopped working due to disabilities. Lincoln enjoyed playing bass guitar while he could. He later enjoyed watching COPS and sharing cooking shows with his mom and friends. Lincoln loved football and fantasy sport leagues. He had many trophies. Lincoln showed generosity to the Humane Society, he loved cats. Lincoln enjoyed spending time with friends, trash talking about sports and being genuine to those he cared for.

Visitation at 1:00 PM 10/30
Service at 2:00 PM
Washburn-McReavy
1827 C**n Rapids Blvd NW
C**n Rapids, MN 55433

VFW at about 3:30 PM"

[ID: Minnesota Vikings football helmet with the team name "Vikings" below the helmet. It is Lincoln's fb cover photo.]

10/10/2026

Cystinosis is categorized as a lysosomal disease. There are an estimated 50 kinds of rare diseases considered lysosomal diseases.

People with a lysosomal disease are at a greater risk for depression, anxiety, and bipolar disorders than the general population.

Recent research on Medical PTSD can be involved with a rare disease diagnosis.

▪︎ Cheryl Simoens, private practice clinical psychologist who lives with cystinosis, recorded her session on the Brain and Body Connection for Next Generation of Cystinosis.

▪︎ Emily Parks, a professional specializing in behavioral health, patient advocacy, and trauma-informed medical education, recorded an educative session on Medical PTSD for NGC.

Their videos are available for viewing here:

https://nextgencystinosis.org/video-resources/



[ID: Rare Disease Day created the graphic shared. The background uses the rare disease day colors of purple, pink, green, and blue in a gradient. A male child is laying on his stomach with some of these colors on the palms of his hands. He is laughing.

The title is "It's World Mental Health Day". The rare disease day logo is in the left corner.]

10/09/2026

Adults with cystinosis and rare disease: please join Next Generation of Cystinosis and Marcelle Asintmah as we do accessible and trauma-informed yoga together for 45 minutes or as your capacity allows.

Comment below or message us for the zoom link for this October 17 event.

More about Marcelle and her background and practice can be found here:

https://www.chronicallysurviving.com/about



[ID: A green background with the Next Generation of Cystinosis logo in the top left corner reads the following announcement:

Finding Yourself Through Movememt
With Marcelle Asintmah

Saturday, October 17, 2026
9:30 am Pacific
10:30 am Mountain
11:30 am Central
12:30 pm Eastern

There are images of air horns on opposite corners.

A picture of our yoga instructor, Marcelle Asintmah, is next to the time zones. Marcelle is a young Metis woman sitting in a wheelchair indoors. She is smiling and facing the camera with her hands in prayer in front of her chest. ]

10/08/2026

October is National Book Month!

This week of October 4-11 is Banned Books week.

Recently, around 10% of books that are challenged academically contain neurodivergent or disabled characters.

Next Generation of Cystinosis has a list of book recommendations educating on disability justice and lived experience by us. Either the authors live with rare disease and/or disability or main and secondary characters are disabled and/or living a rare life.



Check out our list here:

Fiction A Spindle Splintered by Alix E. Harrow (Fantasy) Life’s Too Short by Abby Jimenez Angels Don’t Get Tattoos by Cecelia Zorn Non-Fiction / Biography Disability Visibility: First-P…

10/06/2026

Gooddays re-enrollment and new applications have started for employer-based and marketplace insurance premium assistance and travel assistance for cystinosis-related appointments!



Click on the link below:

Providing resources for life-saving and life-extending treatments Re-Enroll Select start to Re-Enroll. START Apply Now Find out if you qualify and get the application process started. LEARN MORE Check Status Use this form to check status for the current year. GO Our Mission Good Days is the nation.....