Our Leadership

Steve Schleuder I am an adult with Cystinosis in my late 30s, living about 30 minutes outside of Detroit, Michigan. I am a writer, graphic designer, musician, remote contractor, and rare disease advocate.

Being a rare disease advocate is deeply personal to me because I was born with a rare disease called Cystinosis. When I was diagnosed in 1989, the prognosis was that I might live to be ten years old. However, I was fortunate to be born at the right time and in the right place, receiving treatments that have extended both the length and quality of my life. Considering my diagnosis, I have lived a relatively normal life.

Even for those of us with Cystinosis who are fortunate to have access to treatment and a mutation that allows for a somewhat ‘normal’ life, challenges still exist. In my role as President, I work to address these challenges—along with those faced by others in the Cystinosis community—by focusing on education, research, and disability advocacy for adults. My goal with NGC is to lighten the load for those navigating heavier lives.

Bob Dean (he/him) is part of an extended family whose genetic mix includes Crohn’s Disease, Alzheimer’s, various forms of cancer, Ehlers-Danlos syndrome (EDS), and depression. Bob is a retired pastor, having worked with people of all ages providing pastoral care, preaching, teaching, youth leadership, and staff supervision in churches. His continuing education experiences include classes and workshops in the areas of crisis, marriage, and grief counseling, youth ministries, anger management, and post-traumatic stress counseling. He has served on District Hispanic Ministries Boards, Centro Latino of Council Bluffs, IA, Habitat for Humanity chapters, Hospice Boards, and ecumenical and interfaith groups. His interests include kayaking, reading mysteries, and making the perfect s’more al pastor.

Whitney McElroy (she/her) Whitney is, first, and foremost, a mama to her 8 year old twins Lila and Kaiden, who are her reasons for continuing to fight such a rare disease. She is also a 45 year old patient with Cystinosis. Whitney has worked as a Speech Language Pathologist since 2003 shortly after receiving her Master’s degree in Speech Language Pathology from University of Central Florida. Over the last 23 years Whitney has worked with infants, children, and adults who have developmental disabilities ranging from Down Syndrome to Autism to Cerebral Palsy.

Living with Cystinosis has taught Whitney how to be a fighter and her twins have benefited from her tenacity. Growing up in the Cystinosis community Whitney has experienced the lack of support for adults with the disease. She is excited to work and advocate alongside other individuals who have the same goals and mindset as hers; provide resources, support, and a safe space for adults with Cystinosis!

She has held both volunteer leadership positions and career leadership positions (ie: PTSO roles at her children’s school, SLP mentor for newly hired individuals in her public school system, etc).

She enjoys traveling and fitness/working out at the gym.

Rebekah Palmer (she/they) holds a degree in Professional Communications and Emerging Media from UW-Stout in Menomonie, WI. She currently advises the non-profit rare disease organization centering adults with Cystinosis through Next Generation of Cystinosis (NGC), which she co-founded in 2019 with her friend Mika Covington. She is a dedicated rare disease advocate and published author, and her articles have appeared on the rare news website Patient Worthy, digital magazine RARE Revolution Magazine, and #RareIs in addition to the religious and spiritual abuse non-profit resource blog The Vashti Initiative.

Dr. Ana Francisco (she/they) is a (still and time-based) image maker and writer whose work revolves around humanness, identity, belonging and how these themes exist within time, body, and space. Drawing from my background as a neuroscientist, research and experimentation are important pieces in my practice. I started my education in photography in the Bronx Documentary Center in New York. While in New York, I also completed the certificate in Visual Storytelling at the International Center of Photography. Currently, I am completing a masters in Photography and Society at the Royal Academy of Art in The Hague, a film programming intern at WORM Rotterdam, and a 2023/2024 Fotodok Lighthouse Talent. Between 2021 and 2023, I exhibited work in group shows in New York City and was awarded a New York City Artist Corps Grant in 2021. I was recently selected as an Award of Excellence recipient in The Alexia Vision Grant category.

Dr. Jeanine Jarnes, PharmD, is an Assistant Professor in the University of Minnesota Department of Pediatrics, Medical School, adjunct assistant professor in the Department of Experimental and Clinical Pharmacology at the College of Pharmacy, University of Minnesota, and a Graduate Faculty of the University of Minnesota. She serves as a primary mentor for Ph.D. students and lysosomal disease post-doctoral fellowship training programs, a clinical researcher and pharmcogenomicist for the Lysosomal Disease Network, and clinical care for patients with lysosomal diseases at the Advanced Therapies Clinic, University of Minnesota.

She is the Associate Course Director for WORLDSymposium, an annual international meeting that brings together researchers from around the world for the dissemination of lysosomal disease research. Her research focus includes projects in the following areas: adult and pediatric cystinosis, natural history of gangliosidosis diseases (such as Tay-Sachs disease, Sandhoff disease, and GM1-gangliosidosis), small molecule and gene therapies, and infusion therapies for lysosomal diseases. 

Dr. Jarnes obtained a Bachelor of Science in Pharmacy in 1990 and a Doctor in Pharmacy in 2004, both from the University of Minnesota. Her training in genetics includes a Master of Science in Pharmacogenomics from Manchester University, North Manchester, Indiana (2022) and a Pharmacogenetics and Pharmacogenomics Certificate from Stanford University (2021).  She is a Board-Certified Pharmacotherapy Specialist (since 2007), and Board-Certified Oncology Pharmacist (since 2005).