Adult Leadership
Advisory Board

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The Adult Leadership Advisory Board (ALAB) is a group comprised of adults living with cystinosis. This program develops programming and opportunities for adults affected by cystinosis. In order to set the program up for success, the CRN has provided leadership training through a third party consultant.

ALAB’s focus is on the issues and challenges facing our community. They work with CRN board members and other organizations to address the issues, and provide mentorship.

Our goal is to create a group that will not only benefit from the experience, but will contribute to both the ALAB program and the entire cystinosis community.

Current initiatives include:

  • CystinosisTEENS. A private Instagram account dedicated to supporting teens living with cystinosis
  • Cystinosis Rare: A Journey Into the Unknown. A podcast series covering a range of topics impacting our adults with cystinosis and the overall community. Subscribe to the CRN YouTube channel to receive a video upload alert.
    • Podcast 1 – Success Stories
    • Podcast 2– Loss and Grief
    • Podcast 3a– Youth to Adult Transition: A Discussion with Medical Professionals
    • Podcast 3b – Youth to Adult Transition: Adult Panel Discussion
    • Podcast 4 – Cystinosis & Bullying: Adult Panel
    • Podcast 5 (TBA Dec 13) – Cystinosis & Bullying: Caregiver Panel
  • Cystinosis Sessions. Live, face-to-face (video) conversations with cystinosis stakeholders. Sessions are led by adults with cystinosis but all are invited to participate. Topics slated for 2020 include: Coronavirus, Medication, Dependence, Education, Employment, Overcoming Limitations & Goal Setting, Mental Health, Exercise, and more. Visit our Events Calendar to learn more about upcoming Cystinosis Sessions.

This summer, the ALAB was invited to give the keynote address for the 6th Annual Dublin Cystinosis Workshop – the only scientific workshop focused on cystinosis in Europe. See and hear from Cheryl Simoens and Karen Gledhill on our YouTube channel (introduction by Maya Doyle, MSW, PhD, LCSW).


We are currently accepting applications for new ALAB members. If you are interested, please apply here.

'I try not to look at times of struggle or adversity as a negative...adversities in life are opportunities that can create fighters, instill resiliency, and breed an increased level of self-reflection.'

-Cheryl, living with cystinosis

Brian Ensor
Indiana, USA
Karen Gledhill
New York, USA
Jana Healy
Minnesota, USA
Sara Healy
Minnesota, USA
Eddie Langley Jr.
Georgia, USA
Laura McGinnis *Legacy Member*
Tennessee, USA
Megan Morrill
Michigan, USA
Steve Schleuder
Michigan, USA
Cheryl Simoens
Manitoba, Canada