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 such as mental health issues, youth to adult transition, and educational issues. Check out the first episode here, along with an invitation for the second podcast airing on Cystinosis Awareness Day, May 7th: Coping with Loss and Grief.
  • Cystinosis Sessions. Live, face-to-face (video) conversations with cystinosis stakeholders. The second discussion will cover dependence, education, and employment. Call details for the May 2nd event available 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
Heidi Hughes
North Carolina, USA
Laura Krummenacker
New York, USA
Eddie Langley Jr.
Georgia, USA
Laura McGinnis *Legacy Member*
Tennessee, USA
Emily Mello
Connecticut, USA
Megan Morrill
Michigan, USA
Steve Schleuder
Michigan, USA
Cheryl Simoens
Manitoba, Canada