Cystinosis Research Network

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!

Podcast Discussion: Coping with Loss & Grief
2020-05-07
The next topic in the Adult Leadership Advisory Board’s (ALAB’s) podcast series focuses on coping with loss and grief. This is the second installment of the series – Cystinosis Rare: A Journey into the Unknown.
The podcast will be published on YouTube on Cystinosis Awareness Day, May 7th.
Our featured guest and episode leader is Maya Doyle.
Partnering with the cystinosis community for over a decade, Maya is a professor and certified social worker (CSW) specializing in nephrology. Her unique background and set of experiences will make this a conversation you do not want to miss!
In preparation for the podcast recording, please send any questions for Maya or thoughts you’d like to add by emailing Jana at jana_healy752@hotmail.com. Emails will be accepted through April 15th. Your names will be kept confidential and will not be mentioned during the episode.
Subscribe to our YouTube page and receive an email alert when the podcast is available: http://bit.ly/2Y28tsx on Thursday, May 7th. We hope you tune in!

Cystinosis Awareness Day - 3rd Annual
2020-05-07
Cystinosis Awareness Day is recognized as May 7th for the most commonly linked cystinosis mutation, the 57-kb deletion. This marks the third year we’ve come together on this day to support education, awareness, research, and fundraising for our rare disease.
Months of planning go into Cystinosis Awareness Day. In-person events like 57 Miles for Cystinosis or Miles for Moose require training, sponsors, team coordination, and consume a massive amount of time and dedication. With the latest COVID-19 restrictions, this year’s events have been canceled, postponed or re-imagined. We thank the entire community for your unwavering support – now more than ever.
It’s like our CRN President says, “Cystinosis doesn’t stop. Until there is a cure, neither will we.”
Cystinosis does not ease up during a worldwide pandemic; it does not understand quarantine. Not for one single day, not for one hour, not for one second do bodies living with cystinosis get a break. And we thank you for enduring this ongoing battle with us.
Here are a few ways to help us in this fight:

Like & share our awareness video
Update your Facebook profile frame
Share your cystinosis experience with a friend, neighbor, or colleague (in compliance with your local COVID-19 guidelines)
Read inspiring cystinosis stories
Donate
Start a fundraiser by emailing info@cystinosis.org

If you’d like to learn more about cystinosis resources and research, click here. We are proud to be one of the only organizations to provide comprehensive support, education, awareness, and research relevant to each point in the cystinosis journey.
Thank you!

Live Video Conference: Dependence, Education & Employment
2020-05-02 16:00 - 17:30 (America/New_York)
Join the Cystinosis Sessions video conference series hosted by the Adult Leadership Advisory Board (ALAB). Starting May 2nd at 4:00 pm ET, the ALAB welcomes anyone impacted by cystinosis. This “session” will focus on:

Education
Employment
Importance of Being Self-Reliant vs Being Dependent
Essential Needs & Medication
General conversation as time allows

To join the meeting:
https://zoom.us/j/2663523786
Meeting ID: 266 352 3786
Downloading Zoom/Video Conference Preparation

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.

57 Miles for Cystinosis
2020-05-02 | DE, United States

Virtual: Cystinosis Network Europe 2020 International Conference
2020-04-25 07:00 - 15:00 (America/New_York)
Following much consideration, Cystinosis Network Europe (CNE) and Cystinosis Ireland have decided to cancel the in-person International Cystinosis Conference planned for Dublin in July 2020 due the ongoing situation with COVID-19.
The International Cystinosis Family Conference is now taking place online!
On April 25th from 7am to 3pm ET you will have access to this free event. Available in you own home anywhere in the world, you can now watch cystinosis world experts (with translation) presenting the latest information on managing cystinosis; educational issues; bones and muscles; eyes and possible new treatments; kidneys – pre and post transplant and keeping well; the latest research in gene therapy and other new treatments; pregnancy and male fertility; the impact of COVID-19; and maintaining your mental health.
Confirmed speakers include Prof Elena Levtchenko (Chair), Prof Atif Awan, Dr Rachel Bishop, Prof Don Cairns, Dr Anuj Chauhan, Dr Stephanie Cherqui, Prof Paul Goodyer, Prof Paul Grimm, Dr Patrick Harrison, Prof Craig Langman, Dr Herbie Newell, Dr Joyce Senior, and more.
Register Now. To secure your place and notify the group of translation preferences.
About CNE
Cystinosis Network Europe (CNE) which comprises members from patient organizations across Europe and further afield. Eight European organisations come together to support people with cystinosis and promote research and form a network. We have a number of projects ongoing to support people living with cystinosis and their families; an international conference every two years; and the development of a Community Advisory Board in Cystinosis, with the support of EURORDIS.

National Kidney Foundation (NKF) Spring Clinical Meeting
2020-03-25 - 2020-03-29 | LA, United States
*Update* March 10, 2020
Over the weekend, the Centers for Disease Control and Prevention (CDC) updated its recommendations for older adults and people with kidney disease or other severe chronic medical conditions. They note that these groups appear to be at higher risk for experiencing more serious COVID-19 illness. Out of an abundance of caution to protect your health, and the health of the patients you care for, NKF is changing the NKF 2020 Spring Clinical Meetings (SCM) to a Live-Virtual Meeting.
Additional information on the logistics for live-virtual participation will be provided. Because the NKF is providing the conference as a live-virtual meeting, no general registration fees will be waived. However, attendees who purchased lunch workshops or pre-conference course tickets will be reimbursed, please look for additional information on this over the coming weeks.

Cystinosis Sessions: Coronavirus, Medication
2020-03-21 16:00 - 17:30 UTC
Welcome to Cystinosis Sessions, a series created by the Adult Leadership Advisory Board (ALAB). These video conferences aim to help adults living with cystinosis and hope to inform stakeholders beyond our patient community about life with this rare disease.
You are invited to ALAB’s very first video conference – Saturday, March 21 at 4pm ET.
Topic: Medication ***UPDATE*** Given the current Coronavirus/COVID-19 climate, we are adding time to discuss questions and concerns with the ALAB team and Registered Nurse and mom of 2 with cystinosis: Anna Pruitt.
Below you will find a draft agenda and Zoom (video conference provider) log in instructions. Please download Zoom prior to the 4pm ET start time. We hope to see you then!
Draft Agenda:

Coronavirus/COVID-19
Procysbi: Advantages & Disadvantages
Medicine containers
Travel tips/hospital visits with Procysbi, Cystagon and/or eyedrops (Cystaran)
Medication odor tips
Personal experiences (time permitting)

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
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Podcast: Staying Positive while living with Cystinosis
2020-02-29
Welcome to our podcast series – Cystinosis Rare: A Journey into the Unknown.
Lead by the Adult Leadership Advisory Board (ALAB), this series will focus on issues specific to our rare disease.
The initial podcast episode launches on Rare Disease Day – February 29, 2020.
This episode focuses on positive aspects and inspiring stories of adults living with cystinosis. There will be two featured guests: William Brink and Shannon Keizer. William (Bill) will discuss his journey and how his brother inspired him to start weightlifting. Shannon will share her experience from overcoming low mental health to working towards a nursing degree.
ALAB hosts will be Jana Healy, Sara Healy, Steve Scheudler, and Cheryl Simoens. All four are adults living with cystinosis.
The episode will be approximately 1 hour in length.
Subscribe to our YouTube page and receive an email alert when the podcast is available: http://bit.ly/2Y28tsx on Saturday, February 29th. We hope you tune in!
