Meet Marne Harvich-chergi

Melinda: Marne, can you start by telling us a bit about what inspired you to become involved with the CCHS Network?
Marne: Absolutely. My daughter Cassidy’s diagnosis with CCHS is what first brought me to the CCHS Network. I initially sought answers for her frequent blue spells, but what I found was so much more than information – I found a family of people walking the same path and navigating the unknowns of this rare diagnosis together.

After attending my first conference in San Diego, my perspective changed forever. I boarded the plane terrified that something might happen to Cassidy while I was away. I came home with hope, having met incredible families, dedicated physicians, and passionate researchers who helped me see that a bright future was possible. It was truly a life-changing experience. That is why I became involved with the CCHS Network Conference Committee. I want every family to have the same opportunity to find hope, connection, and the sense of community that transformed our lives.My governance experience was inspired by my hope for this organization to grow and prosper for Cassidy and future generations. 

Melinda: How have your personal experiences shaped the role you play within the CCHS community today? 
Marne:  Living with a child diagnosed with CCHS is a roller coaster ride of emotions that has taught me to live our lives not asking “if” but “how” can we live a life beyond all expectations. The amazing support from veteran families has instilled hope and strength that I would of otherwise never been capable of. 

Marne: Selecting a conference venue is a multi-step process. We look for locations that can accommodate the unique needs of our community (e.g. hospitals nearby), provide safe and welcoming spaces for families to connect, and offer onsite or nearby activities, as many families extend the conference into a vacation with their CCHS friends. We also work hard to negotiate the best possible rates to make attendance as accessible as possible.

Melinda: What are some recent accomplishments or initiatives of the Governance or Conference committees?
Marne: For the Governance Committee, our recent focus has been on strengthening the organization as we welcome our new Executive Director on board, positioning the CCHS Network for continued growth and expanded programs to better serve our community.

I am also thrilled to announce that the 2027 CCHS Family Conference will be held onsite at the Universal Orlando Resort – home to the Wizarding World of Harry Potter, Minions Land, Seuss Landing, and many other unforgettable experiences. We can’t wait to bring our CCHS families together for another memorable conference filled with learning, connection, and fun.

Melinda: Thinking about past conferences, can you share a conference program that you believe has had a meaningful impact on the CCHS Community? 
Marne: Definitely! The teen and young adult panel is always a crowd favorite as a unique opportunity to gain real insights on the lived experience from our patients.  

Melinda: What keeps you motivated and hopeful as you lead this work?
Marne: Cassidy, my daughter is my hero! She takes obstacles to living with CCHS head on as an opportunity to prove she can do anything! 

Melinda: What is a CCHS fact or reality, big or small, that never fails to blow your mind? 
Marne: When Cassidy was first diagnosed, I never believed people when they told me, “It gets easier.” Looking back now, I realize they were right. While CCHS never goes away, it becomes part of your life rather than defining it. We learned, adapted, and found our way – and today, we have an amazing life. That transformation never ceases to amaze me.

Melinda: Just for fun – what is your super power?
Marne: Hmm…that’s a tough one! My family would probably say my superpower is the ability to say “no”…often, quickly, and without hesitation!

Melinda: If you could invite any person, living or from history, to join the CCHS community or teach them about CCHS, who would it be and why? 
Marne: Bill Gates so he could invent a wearable that sends push notification to the parents when O2 sat’s drop. 

Melinda: Finally, just for fun – if Hollywood made a movie about the CCHS community, who would play you and what would the movie title be?
Marne: Helena Bottom Carter, since I tend to be a bit insane (think Harry Potter, since our next conference location is Universal) and the title would be “ The Greatest Group of People I Never Wanted to Meet”.