Jennifer Shumsky

Joining the Little Hercules Foundation Family Assistance Program is a dream come true for Jennifer. When her son, Xavier, was diagnosed with Duchenne Muscular Dystrophy at age 4, she knew that she wanted to be able to take her years of nursing experience and focus on helping other families like her own. Jennifer lives with her husband, Frank, in Ann Arbor Michigan with her son, Xavier, who lives with DMD and her daughter, Erica, who lives with Type 1 Diabetes.

Jennifer has over 20 years of nursing experience, most recently for the past 14+ years working in the insurance industry as a Utilization Review Nurse with a focus on appeals and prior authorizations. She has experience with Medicare, self-insured/employer health plans, and commercial plans following the ACA rules. She has also worked in the pediatric clinical setting and operating room. Jen realizes how hard and time consuming the life of a chronic disease parent can be. Her goal in coming to work with Little Hercules Foundation is to help other parents in any way she can to ease the daily burden and stress when it comes to knowing what is needed to take care of our children (and ourselves) and how to obtain it.

Jennifer holds a Bachelor in the Science of Nursing from the University of Michigan (GO BLUE!) and is licensed in the state of Michigan. **

**Little Hercules Foundation does not give medical advice as part of our services. Credentials are listed for informational purposes only.

Amy Aikins

Amy joined the Little Hercules Foundation to use her skills and experience to help individuals and families impacted by rare disease. Amy’s only child, Elijah, was diagnosed with DMD at the age of four.  She has been impacted by Duchenne throughout her entire life, having survived the loss of both her brother and a cousin to the disease.

Amy has spent her professional life working in various capacities within both public and private non-profit organizations focused on serving individuals with disabilities. She has a passion for helping people obtain access to the things that they need and has extensive experience with coordinating community supports, locating and arranging necessary paid services, and navigating benefits such as Medicaid, Medicare, and Social Security. In past roles, she worked in case management as both caseworker and supervisory staff, coordinated an insurance counseling program for Medicare beneficiaries, worked in mental health administration, and held responsibility in the administration of a Medicaid waiver program for individuals with developmental disabilities within county government. 

In her current role, Amy tackles access issues through engagement with stakeholders and involvement in various groups and projects focused on access issues in the rare disease community. She also works directly with individuals and families to address individual needs.

Amy holds degrees in Rehabilitative Science and Special Education from Clarion University of Pennsylvania.

 

Randi Clites

Randi became an advocate for affordable access to healthcare for medically fragile children by leading the parent advisory councils at both Akron Children’s Hospital and Ohio’s Title V Program - Children with Medical Handicaps - through the Ohio Department of Health. In 2012, she represented Ohio as a Family Scholar for the Association of Maternal and Child Health Program. Randi helped develop an annual Statehouse Day in 2008 for the hemophilia community that has engaged hundreds of families in State Advocacy. She was the advocacy coordinator for a coalition of providers, patients, and non-profits serving bleeding disorders patients for over 10 years.

Randi took her passion of working on policy to public office, serving as State Representative for the 75^th Ohio House District during the 133^rd General Assembly. She passed bills to establish a Rare Disease Advisory Council and protect vulnerable patients in Ohio. Randi comes with a lot of non-profit experience in training patients and parents to advocate for access to treatment.

Randi is a fierce advocate for patients and families with rare disorders. Her only child Colton, now 18, was born with severe hemophilia and later diagnosed with leukemia at 15 months old. Randi lives in Northeast Ohio with her husband Matt, son Colton, and their three dogs.  Randi earned her degree in Business Administration with a minor in Political Science from Hiram College.

Jill Castle

Jill became a rare disease advocate over 20 years ago when her son Anthony was diagnosed with Duchenne muscular dystrophy. Since then, Jill has spent her professional life in various roles of education, behavior and advocacy. Her experience ranges from being a Special Education Director, a state mediator for dispute resolution, training and compliance, a district wide behaviorist, and is currently a professor at Amy Lou Fulton Teacher’s college at Arizona State university. She holds an M.Ed in Educational Psychology in conjunction with graduate certifications in Positive Behavior Support, Autism, IEP Facilitation and Functional Behavioral Assessments.

She has helped parents navigate government programs, health care issues and social services for the state of Arizona while supporting parents nationally on Special Education and Behavioral related issues.