High Impact Practices Student Showcase Fall 2024

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Course Code

sop

Course Number

3723

Faculty/Instructor

Martha Hubertz

Faculty/Instructor Email

Martha.Hubertz@ucf.edu

About the Author

My name is Cassidy Chergi. This is my first year at UCF, and I am excited to share with you an amazing organization: The CCHS Family Network and Foundation. This organization has done an impressive job of changing the lives of the very few afflicted with this very rare medical anomaly.

Abstract, Summary, or Creative Statement

Living the Curse, CCHS

By Cassidy Chergi

My service-learning project was an organization very near and dear to my heart I have worked with them most of my life. Imagine the simple act of going to sleep resulting in your death! This is my life, I have CCHS. This extremely rare genetic disorder effectively renders autonomic systems in the affected patience inoperable. The most notably sleep equals death!!!! Additional symptoms include reduced conception of pain, cardiac issues, learning disabilities and motility issues. Obviously, there is often additional collateral damage from repeated hypoxic events. People with CCHS will and are reliant on some sort of ventilation equipment for life.

We are a collectivist community. The organization works in multiple capacities including outreach, awareness, family support, self-funding research and family connections. As one could imagine, living with a diagnosis with less than 2000 cases ever reported worldwide can be isolating for the patient and the families. I have been fortunate to assist the organization in multiple capacities. I have worked on the family conference planning committee for quite some time. Despite insurmountable odds family members of this community have taken a stand for their loved ones. They volunteer there time, efforts and monies in the hope of better future outcomes for generations of CCHS patients for the future. Thru fundraising, education and awareness raising efforts they work tirelessly to support one another in this unexpected journey thru this rewarding journey into the unknown seeking answers for their loved ones.

Keywords

Rare disease, service learning, non profit

Living the Curse


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