Cystinosis Research Network

Cystinosis Sessions: September Video Call
2021-09-11 16:00 - 17:00 UTC
Saturday, September 11th at 4:00pm ET, join the Adult Leadership Advisory Board (ALAB) for a Zoom discussion.
TOPICS
The month’s central topic is COVID-19 and vaccines. This is a fluid discussion and will include the latest CDC announcements, mental and physical well-being, side effects encountered after receiving COVID-19 vaccines, the booster shot available for immunocompromised individuals, personal experiences, and more.
ALL are invited to attend. Please note: this is not just for adults living with cystinosis.
To join, click: https://zoom.us/j/2663523786
Meeting ID: 266 352 3786
Here are instructions to help with downloading Zoom. We recommend completing these steps prior to the call.

Secure access to a mobile device (PC, Apple, Android), desktop or laptop computer
Ensure reliable internet connection
Download Zoom Cloud Meetings here or through your device’s app store
Click on the link https://zoom.us/j/2663523786
Have the Meeting ID ready: 266 352 3786. If you use the link provided, the meeting ID is not needed.

Add the meeting to your calendar by clicking one of the buttons below.

CRN Golf Tournament: Myrtle Beach
2021-08-14 09:00 - 14:45 UTC | Myrtle Beach National Golf Club, 4900 National Drive, Myrtle Beach, SC, 29779, United States
The Myrtle Beach National Golf Club and Gail Potts are hosting a golf tournament benefitting the Cystinosis Research Network on Saturday, August 14th. Click here to register today or make a donation through this website.

Cystinosis Sessions: August Video Call
2021-08-07 16:00 - 17:00 UTC
The Adult Leadership Advisory Board (ALAB) invites you to join the conversation on August 7th at 4pm ET. The video call with be hosted via Zoom.
TOPICS
ALAB members will lead a discussion about the CRN Virtual Conference (held July 16-18, 2021).
To join, click: https://zoom.us/j/2663523786
Meeting ID: 266 352 3786
Here are instructions to help with downloading Zoom. We recommend completing these steps prior to the call.

Secure access to a mobile device (PC, Apple, Android), desktop or laptop computer
Ensure reliable internet connection
Download Zoom Cloud Meetings here or through your device’s app store
Click on the link https://zoom.us/j/2663523786
Have the Meeting ID ready: 266 352 3786. If you use the link provided, the meeting ID is not needed.

Add the meeting to your calendar by clicking one of the buttons below.

2021 CRN Summer Online Conference
2021-07-16 18:00 - 2021-07-18 15:45 UTC
Our biennial conference took place – virtually – July 16 – July 18, 2021.
With the safety and health of our community in mind, we shifted from an in-person event to a 100% online conference series. We are focused on providing an educational, supportive, engaging and fun experience. The beat goes on!
The conference is currently closed. However, select sessions are available now on our YouTube channel and you can review the agenda here.
Our original 2021 conference location of Nashville, Tennessee will now host our face-to-face celebration in 2023. We hope to host more in person regional gatherings in 2022. Please be sure to check back on our website and social outlets for future announcements.

Cystinosis Sessions: July Video Call
2021-07-10 16:00 - 17:00 UTC
The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on July 10th at 4pm ET.
TOPICS
The conversation topics include returning to the workplace after COVID-19 and the CRN Virtual Conference (held July 16-18, 2021).
To join, click: https://zoom.us/j/2663523786
Meeting ID: 266 352 3786
Here are instructions to help with downloading Zoom. We recommend completing these steps prior to the call.

Secure access to a mobile device (PC, Apple, Android), desktop or laptop computer
Ensure reliable internet connection
Download Zoom Cloud Meetings here or through your device’s app store
Click on the link https://zoom.us/j/2663523786
Have the Meeting ID ready: 266 352 3786. If you use the link provided, the meeting ID is not needed.

Add the meeting to your calendar by clicking one of the buttons below.

Cystinosis Sessions: June Video Call
2021-06-05 16:00 - 17:00 UTC
The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on June 5th at 4pm ET.
The conversation is open to the entire cystinosis community. This month’s topic is stress. Let’s discuss what we do for relief and ideas that may help in the future.
To join, click: https://zoom.us/j/2663523786
Meeting ID: 266 352 3786
Here are instructions to help with downloading Zoom. We recommend completing these steps prior to the call.

Secure access to a mobile device (PC, Apple, Android), desktop or laptop computer
Ensure reliable internet connection
Download Zoom Cloud Meetings here or through your device’s app store
Click on the link https://zoom.us/j/2663523786
Have the Meeting ID ready: 266 352 3786. If you use the link provided, the meeting ID is not needed.

Add the meeting to your calendar by clicking one of the buttons below.

Cystinosis Awareness Day - 2021
2021-05-07
Welcome to the 4th Annual Cystinosis Awareness Day!
Started in 2018, Cystinosis Awareness Day was created to bring attention to our rare disease. Educating the general public and medical communities about cystinosis has the power to create a better future for the ~2,000 diagnosed and those awaiting a diagnosis.
Since it’s inception, Cystinosis Awareness Day has become a highly anticipated event. Each year we uncover ways to promote understanding within our personal networks and beyond. Cystinosis Awareness Day has also proven to be a successful fundraising initiative.
We’d appreciate your help this May 7th. Please consider participating in one or more of the ways outlined below. We are small but together we are mighty!
Raise Funds
Your donations fuel educational and support programming and cystinosis research. We are currently funding cystinosis studies over a range of areas. This includes male reproduction, cognitive function, measuring the effectiveness of cystine therapy, and more. Visit our Grants Awarded page to learn more.
For the 4th Annual Cystinosis Awareness Day, your hard earned dollars will go 4x as far. We’ve secured donors ready to match your contribution! For example: a $5 donation turns into $20, $57 becomes $228, or $100 translates to $400. Donations will be matched up to $5,700 (that’s $22,800 for our community!) Click here to donate.
Show your love for the Miles for Moose 5.7 mile walk. Moose is a growing little boy with an amazing “nana” who has been putting together this fundraising event in his honor prior to the COVID-19 pandemic. Show your support by registering here.

Raise Awareness
Let’s eliminate those misconceptions about cystinosis. This is the time to break the stigmas and bust down any myths you may have encountered.
MYTH: Cystinosis journeys are all the same.
MYTH: A kidney transplant will cure cystinosis.
MYTH: I am defined by my disease.
If you are ready to help this myth busting mission, start sharing today. This can be as small as a conversation with yourself/a loved one or a bit larger like sharing with your network of social media followers using #cystinosisaware. Follow the Cystinosis Research Network for ideas and ways to have your “myth” featured for Cystinosis Awareness Day. (Links to CRN social channels found in the icons at the bottom of the page)
The Adult Leadership Advisory Board, our umbrella group with a membership made entirely of adults living with cystinosis, has launched a “Succeeding with Cystinosis” campaign for Cystinosis Awareness Day. They’ve challenged the community to search for the successes and failures we’ve experienced within the last year and to share with the group by emailing Sara at shealy194@hotmail.com.
Thank you for continuing to fight for our cystinosis warriors, this May 7th and every day!

Cystinosis Session: May Video Call
2021-05-01 16:00 - 17:00 UTC
The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on May 1st at 4pm ET.
The Cystinosis Session is open to all who would like to engage in and/or listen to conversation around the following topics:

Caregivers. What happens when they pass?
Wills
Employment
and More

Join Zoom Meeting
https://zoom.us/j/2663523786
Meeting ID: 266 352 3786
Here are instructions to help with downloading Zoom. We recommend completing these steps prior to the call.

Secure access to a mobile device (PC, Apple, Android), desktop or laptop computer
Ensure reliable internet connection
Download Zoom Cloud Meetings here or through your device’s app store
Click on the link https://zoom.us/j/2663523786
Have the Meeting ID ready: 266 352 3786. If you use the link provided, the meeting ID is not needed.

Add the meeting to your calendar by clicking one of the buttons below.

Miles for Moose 5.7 Mile Virtual Walk/Run
2021-05-01 - 2021-05-31

CRN at 2021 Virtual PAS
2021-04-30 - 2021-06-04
The Pediatric Academic Societies (PAS) connects thousands of pediatricians and other health care providers worldwide. This international gathering, delivered virtually in 2021, offers opportunities for a global audience of physician-scientists, clinicians, and educators to share research, explore new ideas, build career opportunities, and collaborate on future projects. Presentations cover issues of interest to generalists as well as topics critical to a wide array of specialty and sub-specialty areas. Learn more here.
Thanks to our cystinosis advocate volunteers, we are able to have a voice at this year’s virtual conference. Please visit our booth at https://www.pas-meeting.org

Cystinosis Sessions: April Video Call
2021-04-10 12:00 - 13:00 UTC
Cystinosis Sessions: April Video Call
All are invited to join as the Adult Leadership Advisory Board hosts a live video call on Saturday, April 10th.
This “Cystinosis Session” will cover but will not be limited to well being, employment and relationships.
Join Zoom Meeting
https://zoom.us/j/2663523786
Meeting ID: 266 352 3786
Here are instructions to help with downloading Zoom. We recommend completing these steps prior to the call.

Secure access to a mobile device (PC, Apple, Android), desktop or laptop computer
Ensure reliable internet connection
Download Zoom Cloud Meetings here or through your device’s app store
Click on the link https://zoom.us/j/2663523786
Have the Meeting ID ready: 266 352 3786. If you use the link provided, the meeting ID is not needed.

Add the meeting to your calendar by clicking one of the buttons below.

Cystinosis Sessions: March Video Call
2021-03-06 16:00 - 17:00 UTC
All are invited to join as the Adult Leadership Advisory Board hosts a live video call on Saturday, March 6th.
This “Cystinosis Session” will focus on the topic of relationships.
Join Zoom Meeting
https://zoom.us/j/2663523786
Meeting ID: 266 352 3786
Here are instructions to help with downloading Zoom. We recommend completing these steps prior to the call.

Secure access to a mobile device (PC, Apple, Android), desktop or laptop computer
Ensure reliable internet connection
Download Zoom Cloud Meetings here or through your device’s app store
Click on the link https://zoom.us/j/2663523786
Have the Meeting ID ready: 266 352 3786. If you use the link provided, the meeting ID is not needed.

Add the meeting to your calendar by clicking one of the buttons below. We hope to see you then!

Rare Disease Day 2021
2021-02-28
The goal of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. This year’s Rare Disease Day theme is : Rare is many. Rare is strong. Rare is proud.
This theme is our call to action. Let’s elevate our voices as a united rare disease community.
Leading up to Rare Disease Day on February 28th, we invite each person impacted by rare disease to share their #RareIn60.
Create a 60-second video,
60-second photo collage or
60-word summary of what you’d like others to know about cystinosis/the rare disease that has affected your life.
Your message can be geared towards friends and family, colleagues, students, health care professionals, etc.
To participate:
– Create your #RareIn60
– Post online the week of February 22 (and/or send directly to cjohnstone@cystinosis.org)
– Use #RareIn60
– Let us know you’ve joined the campaign!
Rare Disease Day Raffle
The Adult Leadership Advisory Board (ALAB) has launched a fundraiser in honor of Rare Disease Day. Every $5 donation received is an entry to win a $100 Amazon gift card and some CRN swag. Enter for your chance to win by selecting “ALAB – Rare Disease Day” from the donate page drop down. The winner will be drawn on March 1. Good luck!

Cystaran Town Hall: Product Shortage 2021 Expectations
2021-02-03 20:00 - 20:30 UTC
Leadiant Biosciences, the distributor of CYSTARAN, is sponsoring a Town Hall meeting on February 3rd. The cystinosis community is invited to attend the event where the following topics will be addressed:

Cystaran shortage updates
Next steps and what to anticipate
Important contact information
Questions from the community

Registration is open here until the event begins, however, questions for the Leadiant panel must be submitted by January 25th.
Update: The CYSTARAN Town Hall recording is now available.

Cystinosis Sessions: January Video Call
2021-01-02 16:00 - 17:30 UTC
All are invited to join as the Adult Leadership Advisory Board hosts our live January video call. This session will touch on the battles and victories associated with cystinosis. Everyone is welcome.
Topics include but are not limited to:

Difficulties coping during COVID and school
Tension between parents, siblings and children
ALAB experiences with parental relationships

Join Zoom Meeting
https://zoom.us/j/2663523786
Meeting ID: 266 352 3786
Here are instructions to help with downloading Zoom. We recommend completing these steps prior to the call.

Secure access to a mobile device (PC, Apple, Android), desktop or laptop computer
Ensure reliable internet connection
Download Zoom Cloud Meetings here or through your device’s app store
Click on the link https://zoom.us/j/2663523786
Have the Meeting ID ready: 266 352 3786. If you use the link provided, the meeting ID is not needed.

Add the meeting to your calendar by clicking one of the buttons below. We hope to see you then!

Cystinosis Sessions:
2020-12-05 12:00 - 13:30 UTC
Saturday, December 5th at 12:00 pm ET, the Adult Leadership Advisory Board (ALAB) will host a live video conference. This month’s topics include the holidays, COVID-19 and eye drops.
Join Zoom Meeting
https://zoom.us/j/2663523786
Meeting ID: 266 352 3786
Here are instructions to help with downloading Zoom. We recommend completing these steps prior to the call.

Secure access to a mobile device (PC, Apple, Android), desktop or laptop computer
Ensure reliable internet connection
Download Zoom Cloud Meetings here or through your device’s app store
Click on the link https://zoom.us/j/2663523786
Have the Meeting ID ready: 266 352 3786. If you use the link provided, the meeting ID is not needed.

Add the meeting to your calendar by clicking one of the buttons below.

Cystinosis Sessions: Diet & Nutrition
2020-11-07 16:00 - 17:00 (America/New_York)
Join the Adult Leadership Advisory Board (ALAB) for the Cystinosis Sessions video conference series – LIVE- on Saturday, November 7th at 4:00 pm ET. The session will focus on

Diet
Nutrition
Regional food favorites

Join Zoom Meeting
https://zoom.us/j/2663523786
Meeting ID: 266 352 3786
Here are instructions to help with downloading Zoom. We recommend completing these steps prior to the call.

Secure access to a mobile device (PC, Apple, Android), desktop or laptop computer
Ensure reliable internet connection
Download Zoom Cloud Meetings here or through your device’s app store
Click on the link https://zoom.us/j/2663523786
Have the Meeting ID ready: 266 352 3786. If you use the link provided, the meeting ID is not needed.

Add the meeting to your calendar by clicking one of the buttons below.

Mulligans Fore Morgan
2020-11-01 11:00 - 15:00 (America/Halifax) | 5820 Rockside Woods Blvd N, 5820 Rockside Woods Blvd N, Independence, OH, 44131, United States
Join us for our first Mulligans Fore Morgan event at TopGolf in Cleveland on Sunday, November 1st at 11:00 AM.
Registration is $75 per player for 3 hours of unlimited play. Each golf bay will hold teams of 6.  An “All-American” lunch is included. Guests will pay individually for alcoholic beverages.

2020 has brought Morgan Peachman a new kidney, and a new lease on life. After turning 13 this summer, and hitting her six month kidney-versary last month, she’s been cleared for most normal activities. And she’ll be hitting the day’s ceremonial first tee shot!
While nothing feels normal this year, The Peachman Family is keeping with the theme of changing times by bringing their family’s annual fall fundraising event to TopGolf in Cleveland to ensure social distancing!
Whether you’re an avid golfer, playing for fun, or have never hit a golf ball in your life, our tournament style format will hit all the marks. Competitive, lots of fun and in support of a good cause, we hope you’ll join us November 1st! If you can’t attend, donations are welcomed and sponsorship opportunities are available. Contact Jen Peachman at jennifer.peachman@gmail.com for details or register using the form below.

LLLFF Virtual 5K
2020-11-01
On the one year anniversary of Laura McGinnis’ passing, the Live Like Laura Fun Fund (LLLFF) was launched. Laura lived life in pursuit of adventure, making memories every step of the way. We’d like to keep her spirit alive by fulfilling as many “fun” requests for the cystinosis community as possible. To grow our funding, we are hosting a virtual 5k on November 1, 2020.

We invite friends, family, and anyone who has been touched by her story and/or cystinosis to take part. It doesn’t matter if you walk, jog, stroll, bike, or scooter; let’s take this time to move our bodies and reflect.

Hosting a virtual 5k means you can participate from anywhere in the world! We’ve got in-person teams meeting on November 1st from Pennsylvania to Kauai.

Online registration is $25 per person. As a small token of gratitude, you’ll receive a commemorative “Live Like Laura” ornament. For any questions, contact Frankie McGinnis at frankiemcginnis@gmail.com.

Cystinosis Gene Therapy & Research Updates: Virtual Meetup
2020-10-14 19:00 - 20:30 UTC
Learn more about gene therapy as it relates to the cystinosis community. Dr. Paul Grimm from from Stanford University School of Medicine and Fernanda Copeland, MS, RD. Head, Global Patient Advocacy & Engagement, AVROBIO are our guest speakers.

Register today to reserve your space at https://us02web.zoom.us/webinar/register/WN_PQZeGL2GT5W1MythBHbDzA.
FREE welcome kits are here – availability is limited.

Cystinosis & Mental Health: Virtual Meetup
2020-10-06 19:00 - 20:30 UTC
Let’s have an open discussion on mental health and living with cystinosis. Everyone within the community is invited! Licensed psychologist, Dr. Cortney Taylor Zimmerman will guide the meetup.
Register today at https://us02web.zoom.us/webinar/register/WN_Gw1Wxj3oQkCi00OpR2WFPQ.
Welcome kits are here – with limited availability.

Cystinosis Sessions: Alternative Therapies, Exercise & Activities
2020-10-03 12:00 - 13:30 UTC
Join hosts from the Adult Leadership Advisory Board (ALAB) for the Cystinosis Sessions video conference series – LIVE- on Saturday, October 3 at 12:00 pm ET. This open discussion will include alternative therapies, exercise and activities.
Join Zoom Meeting
https://zoom.us/j/2663523786
Meeting ID: 266 352 3786
Here are instructions to help with downloading Zoom. We recommend completing these steps prior to the call.

Secure access to a mobile device (PC, Apple, Android), desktop or laptop computer
Ensure reliable internet connection
Download Zoom Cloud Meetings here or through your device’s app store
Click on the link https://zoom.us/j/2663523786
Have the Meeting ID ready: 266 352 3786. If you use the link provided, the meeting ID is not needed.

Add the meeting to your calendar by clicking one of the buttons below.

Cystinosis Basics: Virtual Meetups
2020-09-29 19:00 - 20:30 UTC
Learn more about the fundamentals of cystinosis during our Cystinosis Basics video meetup. Dr. Larry Greenbaum, Emory School of Medicine is our expert speaker. Join us by registering today at https://us02web.zoom.us/webinar/register/WN_HU0G6SQuR4W_G8mmFr3bog.

FREE welcome kits – limited availability.
We hope you can join us!

Caregivers Connect: Virtual Meetup
2020-09-19 17:00 - 18:30 UTC
Caregivers of children with cystinosis under 18 years old are invited.
Join us for a video conference to connect with other caregivers. This is a free networking opportunity. Register at https://us02web.zoom.us/meeting/register/tZUpde2tqj8uH9yGl5nmGG6v1TvprXaLgtOV.

FREE welcome kits – limited availability.
We hope to see you there!

Cystinosis Sessions: Open Discussion
2020-09-05 16:00 - 17:30 UTC
This installment of the Cystinosis Sessions video conference series is live on Saturday, September 5 at 4:00 pm ET. Our September session will be an open forum to discuss the topics on the minds of our fellow cystinosis warriors. We hope you can join us!
Join Zoom Meeting
https://zoom.us/j/2663523786
Meeting ID: 266 352 3786
Cystinosis Sessions were created and are hosted by the Adult Leadership Advisory Board (ALAB). Here are instructions to help with downloading Zoom. We recommend completing these steps prior to the call.

Secure access to a mobile device (PC, Apple, Android), desktop or laptop computer
Ensure reliable internet connection
Download Zoom Cloud Meetings here or through your device’s app store
Click on the link https://zoom.us/j/2663523786
Have the Meeting ID ready: 266 352 3786. If you use the link provided, the meeting ID is not needed.

Add the meeting to your calendar by clicking one of the buttons below.

Podcast: Youth to Adult Transition (part 2)
2020-08-22
Youth to Adult Transition Part 2- Q &A Panel with Adults Living with Cystinosis
Part two of the youth to adult transition discussion is focused on personal experiences of adults living with cystinosis. Joining our panel on behalf of the adult community are Serena Scott (via mum Sue Scott), Kevin McCalla, Ashley Abedini, and Joe Rumney.
Hosts from the Adult Leadership Advisory Board (ALAB) are Jana Healy, Sara Healy, Steve Schleuder, Cheryl Simoens.
Please check back. Link to podcast coming soon.

Podcast: Youth to Adult Transition (part 1)
2020-08-15
Youth to Adult Transition Part 1- Discussion with Medical Professionals
The third podcast from the ALAB will focus on transitioning from youth to adult medical care. Part one of the youth to adult transition conversation begins with the healthcare professional opinion. Join us and special guests Dr. Paul Grimm from Lucile Packard Children’s Hospital and Stanford University of Medicine and Dori Rivera, PAM (Patient Access Manager) from Horizon Therapeutics.
Hosts from the Adult Leadership Advisory Board (ALAB) are Jana Healy, Sara Healy, Steve Schleuder, Cheryl Simoens.
Beginning August 15,2020 at 9am ET, this link will go live and connect you to the podcast via YouTube: https://youtu.be/zEMdQmxR0UU.
Thank you for your interest.

Cystinosis Sessions: Exercise
2020-08-01 12:00 - 13:30 UTC
The Cystinosis Sessions live video series continues on Saturday, August 1st from 12:00pm – 1:30pm ET. The Adult Leadership Advisory Board (ALAB) will lead the discussion open to all community members.
Cystinosis Sessions: Exercise

Importance of exercise
Types of exercise

Strength training
Aerobics
Stretching
Balance training
Moderate vs Intense exercise

And more

Please download the Zoom app prior to the meeting.
Join Zoom Meeting
https://zoom.us/j/2663523786
Meeting ID: 266 352 3786
Click on the above and have the Meeting ID ready, if you use the link provided, the meeting ID is not needed.

Cystinosis Sessions: Mental Health
2020-07-11 16:00 - 17:30 UTC
The forth live video conference hosted by the Adult Leadership Advisory Board (ALAB) will discuss Mental Health, Anxiety, Depression, and Coping. Our featured guest is Maya Doyle, MSW, PhD, LCSW. We look forward to seeing you at 4pm ET on July 11th.
Join Zoom Meeting
https://zoom.us/j/2663523786
Meeting ID: 266 352 3786
Zoom Meetings Instructions
Desktop, laptop or mobile device (PC, Apple, Android)
Reliable internet
Download Zoom Cloud Meetings Here or your devices app store
Click on the above and have the Meeting ID ready, if you use the link provided, the meeting ID is not needed.

Cystinosis Sessions: Overcoming Limitations & Goal Setting
2020-06-06 12:00 - 13:30 UTC
The third live video conference takes place June 6 at 12:00 pm ET. The Adult Leadership Advisory Board (adults living with cystinosis) will host the event. Topics will include:

Facing challenges
Peer pressure
Limitations & how to overcome them
Goal setting

Downloading Zoom/Video Conference Prep

Secure access to a mobile device (PC, Apple, Android), desktop or laptop computer
Ensure reliable internet connection
Download Zoom Cloud Meetings here or through your device’s app store
Click on the link https://zoom.us/j/2663523786
Have the Meeting ID ready: 266 352 3786. If you use the link provided, the meeting ID is not needed.

Join Zoom Meeting
https://zoom.us/j/2663523786
Meeting ID: 266 352 3786
Add the meeting to your calendar by clicking one of the buttons below. We look forward to “seeing” you and hearing you on June 6th!
