The Adult Leadership Advisory Board (ALAB) is a group comprised entirely of adults living with cystinosis.
ALAB’s mission: To share our stories and strength to educate, motivate and empower the entire cystinosis community. Through partnerships with the CRN and other organizations, ALAB focuses on issues and challenges through developing programs, opportunities and mentorship.
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 – Cystinosis & Bullying: Caregiver Panel
- Podcast 6 – Chronic Illness, Stress and Anxieties During the Pandemic
- 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 have included: Coronavirus, Medication, Independence, Education, Employment, Overcoming Limitations & Goal Setting, Mental Health, Exercise, and more. Visit our Events Calendar to learn more about upcoming Cystinosis Sessions.
- Cystinosis Memorial Fund. Apply for financial support to cover technology, career and tutoring/educational needs. Open to teens and adults living with cystinosis.
In July 2020, ALAB gave 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).
'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.'