We are ringing in the new year with three new volunteers who will serve as Directors on the CRN Board. Please join us in welcoming Erica Hall, Frankie McGinnis and Cheryl Simoens.
Erica Hall
Erica lives in South Florida with her husband and two daughters Marley (3.5 years old), who has cystinosis and Julie (8 months old), who is an unaffected carrier. The network of fellow parents who have children with cystinosis has been invaluable at helping hone in on Marley’s care.
Erica is passionate about brainstorming with others to create outside of the box solutions and life hacks for making cystinosis more manageable.
Her professional background is in special education. She is a certified special education and elementary education teacher in Florida with a decade of experience working with all types of special needs.
Frankie McGinnis
Service to my community is important to me and to be an instrument of change is a driving force in my life. I have a Bachelor of Arts majoring in History with a minor in Secondary Education (1996) and a Master of Science in Library Information Science (2020). I work at the University of Tennessee, Knoxville with the Institutional Animal Care and Use Committee (IACUC) as an Administrative Coordinator. My job is to ensure that animals at the university used in research and teaching are treated ethically and humanly in accordance with federal, state and institutional regulations.
I served for a total of 8 years as an Executive Board Member and 6 years as a Board Member for the Cystinosis Research Network (CRN). I am a member at large with the Organ Procurement and Transplantation Network (OPTN) on the Living Donor Committee. The OPTN helps create and define organ allocation and distribution policies that make the best use of donated organs. My daughter’s two transplants and life long struggle with cystinosis taught me the importance of advocacy and the power of community. I appreciate the opportunity to serve the community that I care so deeply for and look forward to serving in any capacity that I can.
Cheryl Simoens
Cheryl Simoens was diagnosed with nephropathic Cystinosis, a rare kidney disease, when she was 10 months old and was a two-time kidney transplant recipient by age 31. Cheryl is now thriving at the age of 40 and dedicates many hours volunteering with organizations to provide support and advocacy for others living with her rare disease and the kidney community at large.
Cheryl continues to volunteer with the Kidney Foundation of Canada, Manitoba Branch, where she provides sessions to promote physical and mental wellbeing in the kidney community and assists with fundraising efforts. Cheryl also lends her patient voice to educate and collaborate with medical professionals on lived experience with a chronic condition to identify areas of need for research and reviews relevant grant proposals. Cheryl volunteered as Chairperson on the Adult Leadership Advisory Board under the Cystinosis Research Network from 2018 to 2021 where she assisted in the creation of the podcast ‘Cystinosis Rare: A Journey into the Unknown.’
Most recently, Cheryl has embarked on a new journey upon completing a Master of Arts degree in Counselling Psychology as a registered psychotherapist. Cheryl currently works as an independent contractor supporting individuals who experience anxiety, relationship conflict, complex trauma, medical trauma, loss and grief and chronic conditions through use of EMDR and CBT.
Cheryl continues providing education and advocacy to diverse populations in hopes of breaking down barriers allowing individuals to heal from experience and transform their future and potential. In her spare time, Cheryl loves tending to her two rescue Huskies and cooking, weightlifting, kayaking, hiking, climbing and cross-country skiing.