Next Generation of Cystinosis, PO Box 772, Ankeny, IA (2025)

09/04/2025

Mark your calendar! Dr. Paul Grimm will be presenting a special zoom call in which he will share about muscle wasting and swallowing obstacles. Adults with Cystinosis are welcome as well as caregivers, spouses and parents.

Wednesday October 15th
5 pm Pacific
6 pm Mountain
7 pm Central
8 pm Eastern

Comment YES if you would like the link!

[ID: Dr. Paul Grimm is wearing a black t-shirt and wears red-rimmed round glasses. He is smiling exuberantly into the camera.]

09/02/2025

We are in plans to reschedule our sessions with Emily Parks POP Medical PTSD. Those with a rare disease diagnosis and caretakers, siblings over 18, spouses, or parents will be able to attend one of the two events. We look forward to letting you know dates and times with details in a few weeks!

September is ***dePreventionAwarenessMonth. Su***de is preventable and help is available.

[ID: the below graphic is from Chronic Love Club. It is a two-toned teal background with the title "Some Possible Causes of Medical Trauma..." on the darker teal and those causes listed and highlighted in orange, yellow, white, green and blue pastels on the lighter teal.

Listed Causes:

• near death experiences
• distressing hospitalizations
• repeated mistreatment by Medical professionals
• receiving a life-changing diagnosis
• aggressive treatments
• having your symptoms repeatedly ignored or dismissed
• repeated invasive procedures
• unexpected complications
• being discriminated against due to your race, ethnicity, or appearance
• being gaslit or misdiagnosed
• being intubated
• major surgeries and ICU stays
• prolonged illness
• emergency medical interventions ]

08/28/2025

Did you know we are the only non-profit who solely supports the mental and emotional needs of adults who are living with Cystinosis?

We are always accepting donations to keep our organization going! Every little bit helps us provide ongoing events for adults living with Cystinosis.

Next Generation of Cystinosis is a non-profit volunteer-run organization founded in 2019.

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

- 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; and
- To provide guidance on where to find information and resources.

[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".]

08/26/2025

This year's lysosomal disease conference will be held in person AND over zoom!

Those with cystinosis and their loved ones and health providers can look forward to listening to:

● living with a body impacted by cystinosis

● endocrinology: hormones, muscle wasting, bone health, and diabetes risks in cystinosis

● Impact of using cysteamine eye drops and cystinosis changes in opthalmology

● updates on advancing research in aging adults with cystinosis and a study in progress spearheaded by Next Generation of Cystinosis with the current support of Engage and Recordati

Register for in-person and/or online here:

https://urldefense.com/v3/__https:/z.umn.edu/WorldFair25registration__;!!AQDxp81HYA!PBJlF_xHP24ZLHq5AsqqbsGX3EIzL1lr9C8npuOzxUc_QrHtkY1uZJ8mk6Xhm_mo1RYh9_LituvimRcpg-QrPFes$

💚🖤🤍❤️💛

[ID: the colors on the slides are the University of Minnesota colors of maroon and gold on a white background.

University of Minnesota
Driven to Discover
Crookston • Duluth • Morris • Rochester • Twin Cities

Slide 1: WORLDFair 2025

September 19, 2025 10 am - 2pm CST

Pacific Standard Time: 8am-Noon
Eastern Standard Time: 11am-3pm

Minnesota Landscape Arboretum
3675 Arboretum Drive
Chaska, MN 55318

WORLDFair 2025 will be a hybrid meeting, which will invite patients, caregivers, and healthcare providers to attend remotely through Zoom.

Slide 2:

Cystinosis Breakout Session

Session Moderator: Dr. Bradley Miller, Profeasor, Division Director, Division of Pediatric Endocrinology, Faculty, Department of Pediatrics, Faculty, Masonic Institute for the Developing Brain (MIDB), Team Member, Mucopolysaccharidosis (MPS) Center, Team Member, Leukodystrophy Center, Pediatric Endocrinologist

Noon to 12:05pm CST Introduction

12:05pm to 12:25pm CST Living As An Adult with Cystinosis: Author Rebekah Palmer, Professional Advisory Council, Cofounder of Next Generation of Cystinosis

12:25pm to 1:05pm CST Cystinosis Impact on Bone Health, androgens, estrogen and other hormones, muscle wasting, and risk of developing diabetes: Dr. Bradley Miller, Pediatric Endocrinologist

1:05pm to 1:25pm CST Opthalmology Changes in Cystinosis and the Impact of Cysteamine Eyedrop Therapy: Opthalmologist (speaker provided by Recordati)

1:25pm to 1:45pm CST Development for Advancing Research and Preparation of the "Living As An Adult with Cystinosis" study: Austin Letcher, MS, Program and Operations Director Engage Health Inc. ]

08/26/2025

Join us for an event with Occupational Therapist Megan Morrill on Saturday September 13th at 10 am Pacific, 11 am Mountain, 12 pm Central, 1 pm Eastern.

Megan will show us ways to strengthen the muscles in our hands.

Please RSVP by August 28th to this event because each person who attends will be mailed FREE putty to be used during Megan’s presentation! Comment HANDS if you would like to join us!

[ID: the graphic below is a light tan background with yellow circles and vertical lines. The title is "How To Strengthen the Hand Muscles with occupational therapist Megan Morrill". Her picture is in the center circle between the two yellow ones. She has long, blonde hair with hazel eyes and is wearing a white jacket. She is smiling into the camera with confidence. The date is September 13. The times are Saturday at 10am Pacific, 11am Mountain, 12 PM Central, and 1pm Eastern. Free hand putty for everyone who attends! Free over zoom! For any adults who are 18 and over who are living with cystinosis.]

08/24/2025

Thank you to those of you who joined us for accessible yoga with Marcelle yesterday and last month!

What other free classes would you like to see us offer over zoom for mental and emotional support for adults who are living with Cystinosis?

[ID: The image is of Marcelle-a young Metis woman sitting in a wheelchair indoors. She is holding up a block used in adaptable yoga for assistance with yoga positions and looking up at the camera mid-teaching.The background shows a curtain behind her. ]

08/21/2025

Reminder!

Marcelle will be back this Saturday August 23rd at 10 am Pacific, 11 am Mountain, 12 pm Central, 1 pm Eastern.

This event is FREE and will take place over zoom!

This yoga session will be 45 min in length and will be focusing on self-compassion/vinyasa/dynamic adaptability.

Take a look at Marcelle Asintmah website ( https://www.chronicallysurviving.com/).

If you would like the link to attend, please comment “YOGA” below!

[ID: The image is of Marcelle-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. The background shows a wall behind her. ]

08/19/2025

We want adults with cystinosis to be part of what is said and known inside their healthcare appointments.

What would you include if you could add to an educational pamphlet for your doctors office?

Share below or private message us!

[ID: the graphic below has a white "thought bubble" on the top half with an image of a lightbulb outlined in green with the phrase "Share Your Ideas!" below it.

The bottom half of the graphic is in green and asks two questions in white:

• What would be helpful for your providers to know about Cystinosis?

• What are some Cystinosis facts your doctors should know before your appointment?

The Next Generation of Cystinosis logo is in the top left corner.]

08/18/2025

Growing older with a childhood disease doesn't make daily living easier. Medical Burnout is real and the exhaustion that sets in has differing ways of showing up.

Do you have tips to share as an adult with cystinosis on coping with medical burnout? Comment below!

[ID: white background with the title "Things That Lead To Medical Burnout". Pink circles show low battery in each one with each list item causing medical burnout:

• endless appointments

• endless medications & side effects

• being in constant pain

• constant advocating for yourself

• paying the price for having fun

• medical bills & handling insurance

• constant state of uncertainty

• trauma & provider gaslighting

• feeling misunderstood

• fighting for a diagnosis

• having to explain your situation

• trial & error treatments

From ]

08/11/2025

Check out this podcast from Calling in Sick on tips to survive prednisone!

08/11/2025

Marcelle will be back Saturday August 23rd at 10 am Pacific, 11 am Mountain, 12 pm Central, 1 pm Eastern.

This event is FREE and will take place over zoom!

This yoga session will be 45 min in length and will be focusing on self-compassion/vinyasa/dynamic adaptability.

Take a look at Marcelle Asintmah website ( https://www.chronicallysurviving.com/).

If you would like the link to attend, please comment “YOGA” below!

[ID: The image is of Marcelle-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. The background shows a wall behind her. ]

08/06/2025

Stating boundaries and reality as a person with disabilities and chronic illness, only to be consistently disbelieved and denied human dignity, takes a toll on mental and emotional health and our physical bodies. We are exhausted.

We at Next Generation of Cystinosis want to provide safe spaces for our peers to express their reality with rare disease.

Send us a message here to chat!

[ID: from kat

When people say "they never use their disability as an excuse" it makes me furious.

Stating my reality is not an excuse. My body has physical limitations that aren't negotiable.

When I tell you I can't do something, it's not an excuse. It's not a matter of positivity. It's truth.]

Next Generation of Cystinosis

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