Next Generation of Cystinosis

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

Monday October 28th 2 p.m. EST/1 p.m. CST/12 p.m. MST/ 11 a.m. PST

Hosted by Next Generation of Cystinosis " ]

Did you know we are now on instagram? Come follow us at @ nextgenerationofcystinosis

Coming up on Wednesday October 23rd! Join us for a chat with Dr. Jeanine Jarnes!

Dr. Jarnes is interested in the unique challenges we face as adults living with Cystinosis and wants to support us! We are creating a survey with her about the unique and often largely unaddressed obstacles for adults living with Cystinosis. Please comment below if you would like the link to join!

[ID: white background with black text announcing:

NEXT GENERATION OF CYSTINOSIS ZOOM SESSION

DR. JEANINE JARNES

RESEARCH & SURVEY ADVISOR

• Wednesday October 23rd

• 11 am Central

• 10 am Mountain

• 9 am Pacific

• 12 pm Eastern

nextgencystinosis.org ]

Wherever adults with cystinosis gather, there are conversations happening about the way we live with this chromosomal disorder and how we choose our lifestyle.




[ID: photo below was taken at the U of MN arboretum of 4 living cystinosis adults.]

Grab your favorite beverage, throw on a costume, and join us for a night of light hearted fun! All adults with Cystinosis are welcome and we will have a giveaway for $100 grocery or gas gift card at the end!

Monday October 21st
8 pm Central
9 pm Eastern
7 pm Mountain
6 pm Pacific

Comment COSTUME if you would like us to send you the link!



[ID: The background is a pale peach and the border around the rectangle meme has black bats, spiders, orange stars, and skeletons dancing.

It announces "Please join us for a" in small black lettering. "COSTUME PARTY" is written in large drippy orange, capitalized letters. The day, date, and time is Monday, October 21 8pm Central also written in black letting. In smaller black lettering and noted above a melting candle is " $100 gift card giveaway!". "Next Generation of Cystinosis" is written in small letters at the bottom.]

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+

Monday October 28th 2 p.m. EST/1 p.m. CST/12 p.m. MST/ 11 a.m. PST

Hosted by Next Generation of Cystinosis " ]

Join us tonight at 6pm central for SUPPORT GROUP TUESDAY with other peers living with cystinosis!

To join this platform and register for meetings follow these steps:

1. Visit HeyPeers
2. Enter your email address, and click continue
3. Enter your First and Last Name, and choose a Username
4. Choose a Password, and agree to the HeyPeers Terms & Conditions
5. Enter some demographic information and agree to Center for Chronic Illness disclaimer
6. Find a meeting from the List or Calendar view, and click Register

Please contact Kerry Heckman, MSW, LICSW at [email protected] or the Center for Chronic Illness at (425) 296-2705 or [email protected] with any questions.
Our mailing address is:
Center for Chronic Illness
P.O. Box 31193
Seattle, WA 98103
(425) 296-2705

[Image Description: a white meme with three pictures vertically arranged to the left of the text. The first picture is of a young woman with black hair and dark skin smiling at her smart phone. She is seated next to a table with a coffee mug and plant on it. The second picture is of an open lap top with a notebook and pen to the side. A person's hands with bracelets, rings, and a watch are also seen on the keyboard. The third picture is of a young white man with short blonde hair and glasses. He is smiling and looking at his laptop. It appears he is outside.

The text to the right is on a white background. The title is in purplish lettering and it reads Web-based Cystinosis Support Group. The smaller text below it is in black lettering and reads A supportive, web-based peer support group for those living with cystinosis facilitated by Kerry Heckman, MSW, LICSW. 3rd Tuesday of the month from 4-5 PST To sign up visit HeyPeers as directed above or contact us at [email protected] or (425) 296-2705 with questions. www.centerforchronicillness.org This program is free of cost.

The Center for Chronic Illness is written in blue lettering at the bottom next to their symbol which is a geometric flower shape that is yellow with purple in the middle and outlined in blue.]

Understanding Indigenous People's Day! Thank you Bridge to Hope for this information about today's holiday.

[ID: First image is the title "Unite in Celebrating INDIGENOUS PEOPLES DAY October 14, 2024 from The Bridge to Hope www.thebridgetohope.org The Bridge to Hope .

The second image explains Indigenous People's Day:

"About Indigenous Peoples' Day

Indigenous Peoples' Day is a day dedicated to honoring and celebrating the cultures, histories, and contributions of Indigenous peoples across the Americas. It is observed on the second Monday of October, a date that traditionally coincides with Columbus Day, a holiday in the United States that has been controversial due to Christopher Columbus' role in the colonization and mistreatment of Indigenous peoples.

The day serves as a reminder of the significant impact that Indigenous communities have had on history, culture, and the environment, while also acknowledging the ongoing struggles they face, including issues related to land rights, cultural preservation, and social justice." ]

Is reading self-comfort for you?

[ID: light blue background with a small, yellow banner on the right displaying " I ♡ books" with a stack of 3 books next to it.

The text down the center has the following quiz:

"ROBYN CARR'S

BOOK LOVER'S QUIZ

How high is your score? One point for each.

1. Read the first chapter of a book in a bookstore

2. Bought a book in an airport

3. Stayed up all night to finish a book

4. Bought a book you already owned

5. Keep track of the books you've read

6. Read more than 20 hours per week

7. Used a receipt as a bookmark

8. Follow more than 10 authors on social media

9. A dog-eared book page makes you cringe

10. Own more than 300 books

11. Sniffed a new book before reading

12. Bought a book without reading the description

13. Cried due to the death of a fictional character

14. Would rather read than go to a party

15. Own a piece of clothing declaring your love of reading

www.robyncarr.com" ]

If you are living with Cystinosis and experiencing swallowing difficulties due to esophageal muscle wasting, did you know dark soda can sometimes help move the food along if it gets stuck?! This is a tip one of our board members recently discovered after an ER trip. Please note this is not medical advice, simply a suggestion!

If you are an adult who is 18 and over living with Cystinosis and are looking for emotional support, we highly recommend joining Kerry Heckman's group call on Tuesday, October 15th at 4 pm Pacific, 5 pm Mountain, 6 pm Central, 7 pm Eastern. Kerry holds a Masters in Social Work! If you would like more info, please comment here or message us. This support is FREE!!!

Send a message to learn more

If you live with a nephropathic cystinosis diagnosis and have medical insurance, reenrollment for financial, and travel assistance related to cystinosis medical appointments has started for 2025:

https://mygooddays.org/reenroll

You'll need:

• social security number
• birthdate
• household size and income
• medical diagnosis of nephropathic cystinosis

Re-Enrollment | Good Days | Patient Application You may now re-enroll for 2021 funding with Good Days! We have streamlined the re-enrollment process to make it easier than ever to access copay assistance.

Did you know? We offer grocery and gas gift cards to support adults living with Cystinosis! Stay tuned to see posts here for these giveaways, or attend one of our live events on zoom!

Mark your calendars! Wednesday October 23rd. Join us for a chat with Dr. Jeanine Jarnes!

Dr. Jarnes is interested in the unique challenges we face as adults living with Cystinosis and wants to support us! We are creating a survey with her about the unique and often largely unaddressed obstacles for adults living with Cystinosis. Please comment below if you would like the link to join!

[ID: white background with black text announcing:

NEXT GENERATION OF CYSTINOSIS ZOOM SESSION

DR. JEANINE JARNES

RESEARCH & SURVEY ADVISOR

• Wednesday October 23rd

• 11 am Central

• 10 am Mountain

• 9 am Pacific

• 12 pm Eastern

nextgencystinosis.org ]

Tomorrow morning! Wednesday September 25th. Join us for a chat with Dr. Jeanine Jarnes!

Dr. Jarnes is interested in the unique challenges we face as adults living with Cystinosis and wants to support us! Please comment below if you would like the link to join!

[ID: white background with black text announcing:

NEXT GENERATION OF CYSTINOSIS ZOOM SESSION

DR. JEANINE JARNES

RESEARCH & SURVEY ADVISOR

• Wednesday September 25th

• 11 am Central

• 10 am Mountain

• 9 am Pacific

• 12 pm Eastern

nextgencystinosis.org ]

This zoom call with Dr. Jeanine Jarnes is happening Wednesday morning/afternoon depending what time zone you live in. Dr. Jarnes is interested in the unique challenges we face as adults living with Cystinosis and wants to support us! Please comment below if you would like the link to join!

[ID: white background with black text announcing:

NEXT GENERATION OF CYSTINOSIS ZOOM SESSION

DR. JEANINE JARNES

RESEARCH & SURVEY ADVISOR

• Wednesday September 25th

• 11 am Central

• 10 am Mountain

• 9 am Pacific

• 12 pm Eastern

nextgencystinosis.org ]

Tomorrow night!!! For any adult living with Cystinosis, you are invited! Stay until the end to win a $100 gift card for gas or groceries!

Meet the board members of Next Generation of Cystinosis. Comment “meet!” below if you would like the link to attend!

[ID: white background with black writing declaring the following information:

NEXT GENERATION OF CYSTINOSIS ZOOM SESSION

MEET THE BOARD MEMBERS OF NGC

• Giveaway for $100 for groceries or gas!

• Monday September 23rd

• 8 pm Central

• 7 pm Mountain

• 6 pm Pacific

• 9 pm Eastern

nextgencystinosis.org ]

Reminder that this event is happening on Monday night! Open to adults living with Cystinosis and any other rare diseases!

Meet the board members of Next Generation of Cystinosis. Comment “meet!” below if you would like the link to attend! There will also be a giveaway for $100 for groceries or gas at the end! We can’t wait! 🎉🙌🏻🔥

[ID: white background with black writing declaring the following information:

NEXT GENERATION OF CYSTINOSIS ZOOM SESSION

MEET THE BOARD MEMBERS OF NGC

• Giveaway for $100 for groceries or gas!

• Monday September 23rd

• 8 pm Central

• 7 pm Mountain

• 6 pm Pacific

• 9 pm Eastern

nextgencystinosis.org ]

Join us tomorrow for this phenomenal virtual event on zoom!

Saturday September 21 at 1 pm Central, join us online for a presentation from Ola Ojewumi!

Ola Ojewumi is an expert in medical discrimination based on age/disability/gender/race and she will have a presentation for us too.

Comment below if you would like the link!

[Image ID:

Ola Ojewumi is a dark-skinned Black woman seated in a motorized wheelchair on a sidewalk. She is wearing a yellow dress and taupe heels. She has long, curly Black hair. In the background, there are several trees and vehicles.]

We are so excited for this event on Monday September 23rd! Meet the board members of Next Generation of Cystinosis. Comment “meet!” below if you would like the link to attend! There will also be a giveaway for $100 for groceries or gas at the end! We can’t wait! 🎉🙌🏻🔥

[ID: white background with black writing declaring the following information:

NEXT GENERATION OF CYSTINOSIS ZOOM SESSION

MEET THE BOARD MEMBERS OF NGC

• Giveaway for $100 for groceries or gas!

• Monday September 23rd

• 8 pm Central

• 7 pm Mountain

• 6 pm Pacific

• 9 pm Eastern

nextgencystinosis.org ]

SUPPORT GROUP TUESDAY -with Kerry Heckman moderating.

Get some peer to peer support with your cystinosis adult peers!

Please join us at 6pm central on September 17, 2024 for support from other cystinosis adult peers.

To join this platform and register for meetings follow these steps:

1. Visit HeyPeers
2. Enter your email address, and click continue
3. Enter your First and Last Name, and choose a Username
4. Choose a Password, and agree to the HeyPeers Terms & Conditions
5. Enter some demographic information and agree to Center for Chronic Illness disclaimer
6. Find a meeting from the List or Calendar view, and click Register

Please contact Kerry Heckman, MSW, LICSW at [email protected] or the Center for Chronic Illness at (425) 296-2705 or [email protected] with any questions.
Our mailing address is:
Center for Chronic Illness
P.O. Box 31193
Seattle, WA 98103
(425) 296-2705

[Image Description: a white meme with three pictures vertically arranged to the left of the text. The first picture is of a young woman with black hair and dark skin smiling at her smart phone. She is seated next to a table with a coffee mug and plant on it. The second picture is of an open lap top with a notebook and pen to the side. A person's hands with bracelets, rings, and a watch are also seen on the keyboard. The third picture is of a young white man with short blonde hair and glasses. He is smiling and looking at his laptop. It appears he is outside.

The text to the right is on a white background. The title is in purplish lettering and it reads Web-based Cystinosis Support Group. The smaller text below it is in black lettering and reads A supportive, web-based peer support group for those living with cystinosis facilitated by Kerry Heckman, MSW, LICSW. 3rd Tuesday of the month from 4-5 PST To sign up visit HeyPeers as directed above or contact us at [email protected] or (425) 296-2705 with questions. www.centerforchronicillness.org This program is free of cost.

The Center for Chronic Illness is written in blue lettering at the bottom next to their symbol which is a geometric flower shape that is yellow with purple in the middle and outlined in blue.]

In July we had an important presentation about medical PTSD with Emily Parks! If you would like the recording of that session emailed to you, please comment here and let us know!