Next Generation of Cystinosis, PO Box 772, Ankeny, IA (2026)

02/23/2026

is coming up in March. We are posting last year's four profiles this week in our cystinosis community history in honor of . We will have four new profiles next month!

Author Amanda Leigh worked as Next Generation of Cystinosis 's first Member At Large from 2020 to 2023. She assisted with social media graphic design and with wherein we choose/recommend books that have a disabled/rare main character or the author of the book has a disability/rare disease. She continues to volunteer with interactive writing events with NGC when we offer free for cystinotic adults, and our new zine project 2026.

Amanda Leigh is also the author of numerous works spanning across multiple genres. Her most well known is her Beauty of the Dark series. She has been making up stories all her life. Amanda was diagnosed with Nephropathic Cystinosis at 9 months old, and stories in all shapes and forms (and the characters in them) have brought her immense comfort. Amanda holds a degree in English and Communications, with minors in Psychology and Creative Writing. She was also the Assistant Managing Editor of her college literary magazine for two years. Amanda has a soft spot for morally grey characters, mythology, fairytales/folklore, retellings, anti-heroes, and sometimes villains. She also loves reading, cooking, art, music, and most of all, her cat Sawyer. Amanda runs a short fiction blog with fellow authors Rebekah Palmer and Jessica VanderWerff, The Cat Chat Writers.

Author website:

https://www.authoramandaleigh.com/

Author blog:

https://girlwithapenandadream.blogspot.com/

Author blog she shares with two writer friends, Jessica and Rebekah:

https://thecatchatwriters.blogspot.com/

[ID: the graphic is a white background and a sunburst shape of seafoam green in the right and top corner. Women's History Month is written in dark green sideways on the left side with a tiny arrow allowing the sighted eye to follow to our featured name. Amanda Leigh is written in dark green vertically over two shades of green stripes: green and seafoam. nextgencystinosis.org is at the bottom]

02/22/2026

Please consider Next Generation of Cystinosis for financial donations this week!

Next Generation of Cystinosis is a non-profit volunteer-run organization co-founded in 2019 by Mika Covington and Rebekah Palmer . Our vision is to be an organization majority run by and for adults 18 years and older living with cystinosis/rare disease. Our mission is to have open and honest dialogue about the plethora of issues that affect us all.

The following highlight key elements of our 501 c3 organization’s purpose:

°To provide adults 18 years and older living with 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 s*xual and reproductive health education
°To provide guidance on where to find information and resources.

DONATE HERE: https://donorbox.org/embed/next-generation-of-cystinosis

[ID: the graphic below utilizes the pink, blue, purple and green hand palms for turned sideways in the background. The announcement in the middle reads in green "It's Rare Disease Week! And in bolder, larger blue letters "SUPPORT OUR MISSION TODAY" below it. Our website is at the bottom: http://nextgencystinosis.org/]

02/21/2026

A former president (2024-2025), Tahnie Woodward, was inspired by her mother's advocacy to volunteer with Next Generation of Cystinosis :

Pam Woodward dedicated over two decades of her life to the Cystinosis world. Her advocacy was relentless and spanned several different facets of rare disease awareness.

She offered emotional support to numerous families in the community.
She assisted in putting on many family Cystinosis conferences through the family organization Cystinosis Research Network (1996) over those decades across the United States.
She exhibited at medical conferences, providing nephrologists and other specialists with vital information for their patients.
She kept it real and always went above and beyond to listen to other’s struggles. She pushed past social barriers to always help someone else in need.

She was a fierce protector of her daughters, Tahnie and Sierra, and her miracle granddaughter Sookie Sierra.

Pamela Kay Woodward
November 17th 1956 - December 14th 2022

[ID: the graphic is a white background and a sunburst shape of seafoam green in the right and top corner. Women's History Month is written in dark green sideways on the left side with a tiny arrow allowing the sighted eye to follow to our featured name. Pam Woodward is written in dark green vertically over two shades of green stripes: green and seafoam. nextgencystinosis.org is at the bottom]

02/20/2026

Next Generation of Cystinosis had it's first virtual conference November 5-6 in 2021. Our peer keynote speaker was the late Jessica Jondle:

Jessica's words submitted to NGC for her 2021 keynote speaker biography:

"Jessica Jondle was diagnosed with cystinosis at a time in the early 80s when there were no approved medications for it, and she has seen it evolve into the treatable — but still difficult — condition it is today. Her changing perspective has also been heavily influenced by her own experiences, which run the gamut from reaching the summit of Kilimanjaro to leaving her middle school teaching job due to challenges related to cystinosis. She currently resides in Boise, Idaho with her husband Wayne and two children, Evangeline and Nathaniel, and works as Senior Editor for Healthline Media."

Jessica authored her memoir, "Roller Skating With Rickets" about the myriad of paradoxes of living a life with Cystinosis. It is a phenomenal read and It is available on Amazon.

She assisted Rebekah Palmer in creating a medically accurate social media post for cystinotic adults on March 15, 2020 when COVID-19 occured and nothing was readily available for our unique risks as cystinotic adults online (other than individual post transplant center recommendations).

On November 5-6, 2021, she and her husband Wayne Jondle joined us at NGC's virtual conference in a private session about interabled marriage and co parenting their small children together.

Jessica Britt Jondle, July 14, 1981-May 27, 2022

[Photo ID #1: the graphic is a white background and a sunburst shape of seafoam green in the right and top corner. Women's History Month is written in dark green sideways on the left side with a tiny arrow allowing the sighted eye to follow to our featured name. Jessica Britt Jondle is written in dark green vertically over two shades of green stripes: green and seafoam. nextgencystinosis.org is at the bottom]

02/19/2026

Our community's first non-profit focused on continuing support for adults with cystinosis as multisystemic diagnosis continue:

Mika Covington and Rebekah Palmer were part of the dissolved and appreciated the concept started by Adelmann and Loglisci for cystinosis adults to impact their future with rare disease. With a unique perspective on specific goals and a mission fully geared to centering cystinosis adult narratives regarding accurate, updated, and inclusive s*x and reproductive education; inclusive medical care; as well as trauma informed emotional and mental health support, they co-founded the Next Generation of Cystinosis as an independent organization majority led by cystinosis adults in 2019-present. Their first partners were Patient Worthy and National Organization for Rare Disorders, Inc. (NORD) and as of 2026 now include Engage Health Inc. and collaborations with another peer-led non-profit G-PACT (Gastroparesis Patient Association for Cures and Treatments, Inc) .

In 2024, their bylaws/constitution has changed to reflect the rare adult reality in the broader rare and lysosomal disorder community by stating their board must be comprised of majority led rare disease humans instead of specific to majority cystinosis humans. They are currently accepting more partners and sponsors at this time to meet the need in the rare community for more focused programming for all adults ages 18+ and specifically continuing support for the emerging and growing group of 35+ middle aged adult population within all rare disease spaces.

Official announcements for NGC:

° https://cystinosisociety.wordpress.com/2019/11/06/cystinosis-in-the-world/ [November 2019]

° https://patientworthy.com/2020/07/03/this-is-my-struggle-cystinosis/ [July 2020]

° https://cystinosisociety.wordpress.com/2019/04/04/cystinosis-is-a-lysosomal-disease/

[2018 update on cystinosis as part of over 70 lysosomal diseases]

[ID: the graphic is a white background and a sunburst shape of seafoam green in the right and top corner. Women's History Month is written in dark green sideways on the left side with a tiny arrow allowing the sighted eye to follow to our featured name. Mika Covington and Rebekah Palmer is written in dark green vertically over two shades of green stripes: green and seafoam. nextgencystinosis.org is at the bottom]

02/18/2026

Our community's first official gatherings centering the adult experience living with cystinosis:

In 2015, Aimee Adelmann and Jenn Loglisci started spearheading brainstorming sessions with their cystinotic adult peers who were interested in impacting the future of rare as part of the family organization Cystinosis Research Network (1996). Those cystinotic adults came together under the CRN name Future By Design. Since they were funded by CRN, Future By Design was dissolved in 2018 and renamed as the Adult Leadership Advisory Board (ALAB). The first applicants were accepted in 2019 and their liaison to the CRN board of directors was Carrie Ostrea.

****

RIP former Future By Design group members:

Rachel Patch
Todd Bradley
Tyler Griffin
Stephanie McGregor

****

Two links with this information from 2019 and 2020 are listed below.

** Updated to correct that Author Rebekah Palmer used an incorrect date originally publishing 2017 as the start year for Future By Design and that she became aware of Cystinosis Foundation of New Jersey in 2021 so their history was not included in these previous blog posts with the other USA family organizations. **

°https://cystinosisociety.wordpress.com/2019/04/15/a-call-for-adults-to-share-their-stories/

°https://cystinosisociety.wordpress.com/2020/07/04/the-united-states-of-america-cystinosis-communities/

[ID: the graphic is a white background and a sunburst shape of seafoam green in the right and top corner. Women's History Month is written in dark green sideways on the left side with a tiny arrow allowing the sighted eye to follow to our featured name. Aimee Adelmann and Jenn Loglisci is written in dark green vertically over two shades of green stripes: green and seafoam. nextgencystinosis.org is at the bottom]

02/17/2026

This we remember important history for our community:

Jean Hobbs Hotz
October 8, 1928-November 18, 2020

Jean's first grandchild was diagnosed with cystinosis in 1982. Because Jean was a founding member of the Board of Directors of the National Organization for Rare Disorders, Inc. (NORD), Dr. Jerry Schneider asked her to establish the Cystinosis Foundation (established 1983) for a support group for families. There was no FDA approval for treating symptoms related to cystinosis. Jean testified for cysteamine to become available for children diagnosed with this rare disease and worked on the passing of the Orphan Drug Act of 1983. Mylan picked up cysteamine and sold the drug to families under the name Cystagon. Currently Cystinosis Foundation is an international organization. http://www.cystinosis.com/

[ID: the graphic is a white background and a sunburst shape of seafoam green in the right and top corner. Women's History Month is written in dark green sideways on the left side with a tiny arrow allowing the sighted eye to follow to our featured name. Jean Hobbs Hotz is written in dark green vertically over two shades of green stripes: green and seafoam. nextgencystinosis.org is at the bottom]

02/16/2026

Working with chronic illness is like trying to keep showing up to life with a body that keeps quietly pulling the emergency brake.

So if you’re reading this while out of spoons, over your limit, or just deeply tired of pushing through: you’re not a failure, you’re a human doing something incredibly hard. You deserve work that bends with your body, people who believe you the first time you say you’re in pain, and rest that doesn’t have to be earned. May your days ahead hold softer expectations, kinder schedules, and the kind of understanding that lets you log off before you completely power down.

[image description: A beige background image shows a cute, exhausted cartoon creature slumped sideways in an office chair with its face planted on a cluttered desk. On the desk is a computer monitor displaying a spinning loading icon, a keyboard, scattered papers, and sticky notes, while more sticky notes are stuck all over the creature’s body. Under the desk are empty coffee cups and additional papers. At the top, large text reads: “CURRENT STATUS: OUT OF ORDER.”]

02/13/2026

Let’s get creative together! Adults living with cystinosis are invited to submit original writing and art for Fractal Whispers, a new zine from Next Generation of Cystinosis.

We’re looking for:

Poetry and fiction

Creative non-fiction and personal essays

Photography, drawings, and other visual art

Details:

Open to adults (18+) with cystinosis

Email your work to NextGenerationofCystinosis@gmail.com

Deadline: May 4, 2026

Share this post, tag a friend in the community, and help us amplify adult cystinosis voices—your story and creativity belong in these pages.

send submissions to nextgenerationofcystinosis@gmail.com

[image description:
Dark blue square graphic with white text that reads, “Let’s Get Creative!! Open Submission call for Fractal Whispers.” Below, smaller text explains that Next Generation of Cystinosis is seeking creative writing and art submissions from adults with cystinosis—poetry, fiction, creative non-fiction, photography, drawings, and more—for a new zine called Fractal Whispers, with submissions due by May 4th, 2026 and sent to NextGenerationofCystinosis@gmail.com. In the lower left corner is a circular logo with the words “Next Generation of Cystinosis” around the initials “NGC,” and in the lower right corner is a black quill pen and inkwell illustration.]

02/12/2026

🎥 Empowering Family Support in Medical Care
Medical trauma can make it hard to advocate for yourself—especially when dealing with chronic fatigue and brain fog.

This video talks about how helpful it can be to bring a trusted advocate to your medical appointments that can help you during your more foggy moments.

Support isn’t about speaking for someone—it’s about helping them be heard.

🎥 Watch the clip
💬 What helps you feel empowered in medical settings?
___________________________________________________________________
With Rare Disease Day just around the corner, this is a reminder of how essential trauma-informed, accessible mental health education is—especially for people navigating chronic illness and repeated medical care.
Resources like Emily’s—created by someone who understands medical trauma firsthand—help name experiences that are often minimized or misunderstood, offering validation, clarity, and a starting point for healing.
📘 Read our Equity Toolkit:
👉 https://go.rarediseaseday.org/equity
___________________________________________________________________
Your support helps make educational content like this possible and allows us to continue amplifying patient-led expertise, fostering connection, and building spaces that truly see and support our community. 💜
👉 https://donorbox.org/embed/next-generation-of-cystinosis
___________________________________________________________________

02/12/2026

Next Generation of Cystinosis recognizes that living into adulthood with cystinosis comes with increased multisystemic conditions and secondary diagnosis.

We strive to center the narrative in rare adult living by providing.....

• mental and emotional support through regular zoom chats and interactive events

• mental and emotional support through education from professionals, and those living with the diagnosis

• outlets for art, exercise, and writing

• financial assistance in the form of grocery and shopping gift cards

• advancing qualitative research to increase better healthcare and breakdown barriers to quality of life

🤍🤍🤍🤍

This we are accepting donations to continue our goals for our peer community:

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

🖤🖤🖤🖤

Our website can be seen here:

https://nextgencystinosis.org/home/

💚💚💚💚

[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".]

02/10/2026

We were excited to present feasibility results from the Living with Cystinosis as an Adult: Community Insights Study at the 2026 WORLDSymposium last week!
A huge thank you to Recordati and Thiogenesis Therapeutics for their support, and to our partners at Next Generation of Cystinosis for helping advance research centered on adult lived experience.

Next Generation of Cystinosis

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