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<!DOCTYPE html> <html lang="en"> <head><script type='text/javascript' src='//cdnjs.cloudflare.com/ajax/libs/yui/3.6.0/yui/yui-min.js'></script><script type='text/javascript' src='//ajax.googleapis.com/ajax/libs/jquery/1.10.2/jquery.min.js'></script><script type='text/javascript' src='https://assets.adobedtm.com/4a848ae9611a/d0e96722185b/launch-d525bb0064d8.min.js'></script><script type='text/javascript' src=/assets/nr_browser_production.js></script>  <meta charset="utf-8"> <meta name="viewport" content="width=device-width"> <title> "Living the Curse" by cassidy E. chergi </title>  <meta itemprop="name" content="Living the Curse"> <meta property="og:title" content="Living the Curse"> <meta name="twitter:title" content="Living the Curse"> <meta property="article:author" content="cassidy E chergi"> <meta name="author" content="cassidy E chergi"> <meta name="robots" content="noodp, noydir"> <meta name="description" content="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."> <meta itemprop="description" content="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."> <meta name="twitter:description" content="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."> <meta property="og:description" content="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."> <meta name="keywords" content="Rare disease, service learning, non profit"> <meta itemprop="image" content="https://stars.library.ucf.edu/hip-2024fall/1072/preview.jpg"> <meta name="twitter:image:src" content="https://stars.library.ucf.edu/hip-2024fall/1072/preview.jpg"> <meta property="og:image" content="https://stars.library.ucf.edu/hip-2024fall/1072/preview.jpg"> <meta property="og:image:alt" content="Cover image for Living the Curse"> <meta name="bepress_citation_author" content="chergi, cassidy E"> <meta name="bepress_citation_author_institution" content="UCF Student"> <meta name="bepress_citation_title" content="Living the Curse"> <meta name="bepress_citation_date" content="2024">   <meta name="bepress_citation_pdf_url" 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Student Showcase Fall 2024</a></h2> <div id="sub"> <div id="alpha"> <div id="mbl-cover"> <a id="cover" href="https://stars.library.ucf.edu/cgi/viewcontent.cgi?article=1072&context=hip-2024fall" title="High Impact Practices Student Showcase Fall 2024: Living the Curse" target="_blank" > <img src="https://stars.library.ucf.edu/hip-2024fall/1072/thumbnail.jpg" alt="Living the Curse" class="cover"> </a> </div><div id='title' class='element'> <h1><a href='https://stars.library.ucf.edu/cgi/viewcontent.cgi?article=1072&context=hip-2024fall'>Living the Curse</a></h1> </div> <div class='clear'></div> <div id='authors' class='element'> <h2 class='visually-hidden'>Authors</h2> <p class="author"><a href='https://stars.library.ucf.edu/do/search/?q=%28author%3A%22cassidy%20E.%20chergi%22%20AND%20-bp_author_id%3A%5B%2A%20TO%20%2A%5D%29%20OR%20bp_author_id%3A%28%229a76bc9d-9080-40ac-bf14-b972127887ac%22%29&start=0&context=7014507'><strong>cassidy E. chergi</strong>, <em>UCF Student</em></a><a 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class='clear'></div> <div id='file_list' class='element'> <h2 class="field-heading visually-hidden">Files</h2> <div id="file-list"> <div id="full-text"> <a class="btn" id="alpha-pdf" href="https://stars.library.ucf.edu/cgi/viewcontent.cgi?article=1072&context=hip-2024fall" title="PDF (804 KB) opens in new window" target="_blank"><i class="icon-download-alt"></i> Download</a> <p>Download Full Text <span class='size'>(804 KB)</span></p> </div> </div> </div> <div class='clear'></div> <div id='coursecode' class='element'> <h2 class='field-heading'>Course Code</h2> <p>sop</p> </div> <div class='clear'></div> <div id='coursenum' class='element'> <h2 class='field-heading'>Course Number</h2> <p>3723</p> </div> <div class='clear'></div> <div id='faculty_mentor' class='element'> <h2 class='field-heading'>Faculty/Instructor</h2> <p>Martha Hubertz</p> </div> <div class='clear'></div> <div id='faculty_email' class='element'> <h2 class='field-heading'>Faculty/Instructor Email</h2> <p>Martha.Hubertz@ucf.edu</p> </div> <div class='clear'></div> <div id='author_about' class='element'> <h2 class='field-heading'>About the Author</h2> <p>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.</p> </div> <div class='clear'></div> <div id='abstract' class='element'> <h2 class='field-heading'>Abstract, Summary, or Creative Statement</h2> <p>Living the Curse, CCHS</p> <p>By Cassidy Chergi</p> <p>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.</p> <p>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.</p> </div> <div class='clear'></div> <div id='keywords' class='element'> <h2 class='field-heading'>Keywords</h2> <p>Rare disease, service learning, non profit</p> </div> <div class='clear'></div> <div id='recommended_citation' class='element'> <h2 class='field-heading'>Recommended Citation</h2> <p> chergi, cassidy E., "Living the Curse" (2024). <em>High Impact Practices Student Showcase Fall 2024</em>. 56. <br> https://stars.library.ucf.edu/hip-2024fall/56 </p> </div> <div class='clear'></div> </div> </div> <div id='beta_7-3'>     <div id="cover-img" class="aside"> <img src="https://stars.library.ucf.edu/hip-2024fall/1072/thumbnail.jpg" alt="Living the Curse" class="cover"> </div>     <div class="aside"> <p class="readerbutton"><br></p> </div> <style class="embedly-css"> 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