Phelan Lucky Foundation
Phelan Lucky boldly redefines the idea of luck. For the families affected by Phelan-McDermid syndrome, a rare genetic disease, it’s a rallying cry that captures attention and shines a light on the strength, resilience, and unwavering spirit of a community united by this cause. Despite the challenges of this heartbreaking condition, Phelan Lucky speaks to the gratitude we feel for every step forward, every act of support, and every connection made on our journey.
Phelan Lucky turns the idea of luck on its head focusing not on chance, but on the powerful impact of community and awareness as we work towards creating a better and brighter tomorrow for those with #phelanmcdermidsyndrome. We are lucky to have found each other, lucky to unite for a kinder tomorrow, and lucky to make a real difference together. Our middle child Jack is one of only 500 people in the world diagnosed with a chromosomal abnormality called Ring 22. It is a rare form of Phelan-McDermid syndrome (PMS), which, in and of itself is considerably rare. There are approximately 3,750+ known cases of PMS in the world but it is felt that this number is low due to the large number of people who are undiagnosed. PMS is a genetic syndrome caused by a deletion, or loss, of the terminal segment of the long arm of chromosome 22.
The loss may result from a simple deletion, an unbalanced translocation, a ring chromosome, or other structural changes. In a majority of cases, the SHANK3 gene, which codes for the shank3 protein, is lost as a result of the deletion. Other cases have been described with mutations within the SHANK3 gene.
Most identified cases of PMS are in small children because testing is usually done early in life and reliable testing did not start until 1998. New genomic testing methods have not only made clinical testing more widely available, but have also led to significant new insights about the role of SHANK3 in PMS, autism, and schizophrenia, and the possible impact of other missing genes in cases of PMS.
Individuals with PMS often have autism or autism spectrum disorders. Children diagnosed typically have severe cognitive disabilities, are non-verbal, and have a propensity for seizures and sleep disorders among a list of other presentations. With the odds stacked against Jack and his peers, you may be wondering why we are PHELAN LUCKY.
Jack has the ability to draw you in with his incredibly telling eyes, he has the knack of making your heart smile with his contagious belly laugh and a capacity to inspire you with his never-ending determination and persistence that makes us feel extremely lucky. We have become involved with the Phelan McDermid Syndrome Foundation (PMSF), a passionate group of determined parents, dedicated doctors, and thirsty researchers who are on a tireless pursuit to push science forward and help create better lives for Jackie and others like him. We were lucky to find them and they have inspired us to do our part.
Phelan Lucky Board of Directors
Founding Member / President
Jennifer Randolph brings both personal commitment and professional expertise to her role as a board member. She is the parent of a child with Phelan-McDermid Syndrome, intellectual disability, and Autism, and is a dedicated advocate for students and adults with disabilities.
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After many years as a kindergarten teacher, Jennifer transitioned into nonprofit leadership, serving as a Development Coordinator, leading member outreach, and chairing fundraising initiatives. Since 2014, she has organized the annual “Phelan Lucky” campaign benefiting the Phelan-McDermid Syndrome Foundation, raising over $1 million for research and family support. She is the trademark owner of the Phelan Lucky brand and logo.
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Jennifer is the inspiration behind and founding member of Phelan Lucky Foundation, committing her time and energy to supporting Delawareans and others with special needs. She also owns JLR Consulting, advising nonprofit clients on fundraising strategy and social media development.
Founding Member / Treasurer
Eric Randolph brings both professional expertise and deeply personal commitment to his service as a nonprofit board member. As the father of a child with Phelan-McDermid Syndrome, intellectual disability, and Autism, Eric understands firsthand the challenges and triumphs experienced by families navigating complex medical, educational, and support systems. His lived experience informs his advocacy and fuels his dedication to improving outcomes and expanding opportunities for individuals with disabilities.
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Eric has devoted 28 years to the field of school psychology, working extensively with students with disabilities across a wide range of needs. Throughout his career, he has conducted comprehensive psychoeducational evaluations, developed individualized education programs (IEPs), collaborated with multidisciplinary teams, and partnered closely with families to ensure students receive appropriate, research-based interventions and supports. His expertise spans special education law, behavioral intervention planning, inclusive practices, and systems-level program development.