Foundation creates new position to elevate personalized, on-demand, Sanfilippo-specific support to families

April 12, 2024

Delivering the personalized information and support that you need, when you need it

Parents of children with Sanfilippo Syndrome face significantly more decisions on a daily basis than average parents. Not only are the decisions more in quantity, but also in complexity, gravity, and rarity. In fact, they face decisions most parents never have to consider.

And with the enormity of daily care for a child with Sanfilippo, they often don’t have time for extensive research, opinion gathering, and hunting for resources as they work to make the best decisions possible for their child’s care, education, wellness, and comfort.

More than anything, they need someone with Sanfilippo-specific knowledge and experience who is just an email, text, or phone call away. Someone who can quickly arm them with answers, insights, or connections that will assist them in making those decisions, tackling what’s coming next, or how to advocate for their needs.

Seeing this as a significant need among Sanfilippo families today, Cure Sanfilippo Foundation is expanding its ability to provide personalized, on-demand, and Sanfilippo-specific support and information through a new full-time position. The new Community Outreach and Education Coordinator position is dedicated to meeting this need.

“Keeping families at the center of the Foundation’s mission is critical to us, because we personally understand the extreme challenges of life with Sanfilippo. Being able to offer all Sanfilippo families more individual, ‘right now,’ and Sanfilippo-specific support is a critical way to meet the community’s needs,” said Foundation President and Co-Founder Glenn O’Neill.

“As the number of families that reach out to the Foundation continues to increase every year, we want to ensure we are doing our best to meet their needs promptly and in a way that addresses their unique questions and needs,” said O’Neill.

We are pleased to announce that Kassidie Reynolds has joined the Foundation as the new Community Outreach and Education Coordinator, bringing with her a wealth of unique personal and professional experience to the role.

Kassidie’s younger brother, now 26, was born with Pitt Hopkins Syndrome, a genetic neurodevelopmental condition, and she has helped her parents care for him since she was 4 years old.

She graduated from Winthrop University in South Carolina with a B.S. in Special Education and worked for several years as a special education teacher in the public school system, specializing in teaching students with profound intellectual and physical disabilities. She worked closely with related services (PT, OT, Speech, Vision, ABA, Nursing, etc.), classroom staff, and families to meet the individual academic and functional needs of each student.

She left teaching in 2023 to focus full time on finishing her Master’s degree in Learning Experience Design and Educational Technology, to enhance her expertise in defining the unique needs of individual students and develop custom and creative learning solutions for them that include the full spectrum of educational ages (kindergarten to adulthood). She received her Master’s degree from Western Governors University in November 2023.

Kassidie has personal “lived experience” with Sanfilippo and developed a passion for all children with the disease during her years spent as a part-time caregiver for Eliza O’Neill, Glenn and Cara’s daughter. She was Eliza’s caregiver for several years, during school summer breaks when she was teaching and up through completion of her Master’s.

As she and the O’Neills worked on the transition plan for ending her time as Eliza’s caregiver, Kassidie shared her professional goal of finding a job that would utilize her experience, training, and passion for helping children with special needs at a larger scale than her past work in the classroom.

“As we felt the increasing need for a family-centered position at the Foundation, the role began to take shape, and it was clear that Kassidie would be an excellent fit. In addition to her many relevant skills, Kassidie brings special expertise to our community around the development of individualized education plans for children within the school setting,” said O’Neill. “Families will be very excited by how Kassidie’s extensive personal, educational, and professional background, paired with her enthusiasm and passion for children with Sanfilippo, will provide such broad and deep support for them.”

“I am excited for the opportunity to provide support to the parents, caregivers, and children of the Sanfilippo community,” said Reynolds. “I truly believe my professional, personal, and educational background put me on the path to serve the Foundation in this role and this job feels like my calling.”

The new position will help channel the Foundation’s deep engagement with families throughout the U.S. and the world, work with researchers and clinicians regarding development of therapeutic strategies and clinical care specific to Sanfilippo Syndrome, and lived experience to help parents make informed decisions throughout the life of their child.

Kassidie will be available to Sanfilippo families starting Tuesday, April 22. She is eager to begin interacting with the broader Sanfilippo community, including the many families she has followed on social media for so many years.

“Our aim is to provide families with ‘What they need, when they need it.’ Simple as that. Because this life is hard enough. We want families to have the best Sanfilippo-specific information, unique to their situation, available from people with medical, scientific, and lived experience so they can make the best decisions for their child,” said O’Neill.

Kassidie with Eliza during the summer

Kassidie earned her Master’s degree in Learning Experience Design and Educational Technology from  Western Governors University

Kassidie with her younger brother, who has Pitt Hopkins Syndrome, a genetic neurodevelopmental condition

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