MNLEND Fellow Speaks at Hollywood Fundraiser with Conan O’Brien

Publication date: 
May 15, 2019

On April 11, ICI’s MNLEND Fellow Olivia Maccoux spoke at a sold-out Hollywood fundraiser headlined by comedian Conan O’Brien (pictured together). “In Stitches: A Night of Laughs with Conan and Friends” was covered by the Hollywood Reporter and raised over $300,000 to support critical research and programs that improve the quality of life for people living with hydrocephalus, an incurable lifelong condition that affects over one million Americans, and which Maccoux acquired when she was born three months premature. Hemorrhages in her infant brain developed into hydrocephalus, which is an abnormal amount of spinal fluid putting pressure on the brain. Hydrocephalus can develop at any age and the only “treatment” is brain surgery: implanting a shunt to drain the fluid. Although life-saving, shunts usually fail after a few years and must be replaced.

“I live brain surgery to brain surgery,” Maccoux told the audience of more than 400 people that included the public and stars such as Max Greenfield, Seth Green, and Terra Jole. “I am 23 years old and I have had 140 surgeries. I have also developed epilepsy, cerebral palsy, Chiari malformation, and medical traumatic stress as complications of hydrocephalus. I will be dealing with these serious, scary, frustrating, terrible things the rest of my life.”

But rather than recoil from these excruciating, “scary, frustrating, terrible things,” Maccoux has embraced them. “Hydrocephalus and my lived experiences have given me a purpose to advocate for those with invisible illness and disabilities. I use the things I have gone through to help people like myself. I am called to be an advocate. I love it, I’m good at it, and that is why I decided to apply to be a MNLEND Fellow. I graduate college next month with a degree in communications. I want to work in advocacy, public health, awareness, fundraising, and sharing my story. I have been blessed with building an amazing network of doctors, scientists, families, self-advocates, and patients. I have been given many, many opportunities over the years to share my story and give hope, support, and inspiration to others, particularly through the Hydrocephalus Association.”