Thank you to all those who attended our online seminar with our special guest, Olivia Goodreau, on Sunday 23rd April.
Olivia shared her experience with Lyme disease, talked about setting up her charity at just 12 years old, and her new book, ‘But She Looks Fine: From Illness to Activism’.
The full recording and the slides from the session can be accessed below.
- Video recording of online seminar with Olivia Goodreau.
- Slides from the online seminar with Olivia Goodreau.
You can also read more below about Olivia and the facilitator of the session, Julia Knight.
Olivia is the founder of LivLyme Foundation, a 501(c)(3) nonprofit that provides financial assistance to children and their families struggling with Lyme and other tick-borne diseases while also supporting the work of researchers and scientists who are dedicated to finding effective treatments and cures for tick-borne diseases. Olivia is also the inventor of the free global TickTracker App, the Tickmojis App, and recently launched her latest free app, LongHaulTracker.
Olivia founded the LivLyme Foundation in 2017 when she was 12 years old to raise money for children who cannot afford their Lyme treatments, to fund research to find a cure for Lyme and other tick-borne diseases, and to educate the world about ticks.
Olivia has given over 100 financial grants to children ranging in age from 2-21 to help with their Lyme and tick-borne disease treatments. She has received nearly 1000 applications from 49 states. Olivia has given multiple scientific grants to Stanford University, Johns Hopkins Bloomberg School of Public Health, and the University of New Haven.
Olivia’s memoir “But She Looks Fine – From Illness to Activism” launches May 9, 2023. So many young people are faced with life-changing hardships— from illness and disease to loss and calamity. What Olivia discovers through her journey with chronic Lyme, and what she has been sharing with the world, is that inside of every predicament is also a possibility. This is the story of how Olivia turned the physical challenges and emotional hardships she had faced since she was a little girl into an engaged life of advocacy for others.
Olivia has testified twice in front of the U.S. Department of Health & Human Services, Tick-Borne Disease Working Group, and both the House and Senate in Maryland. Olivia has testified behind closed doors to Congress at the request of Congressman Chris Smith of New Jersey. She helped pass the Kay Hagan Tick Act at the personal request of Senator Susan Collins of Maine, which appropriated $150 million dollars for tick-borne diseases. Olivia lobbied with the Center for Lyme Action and spoke at their inaugural “fly in” helping to increase the tick-borne diseases congressional budget by $91 million.
Olivia has presented at the U.S Department of Labor, The White House, the U.S. Department of Health and Human Services, The U.S. Census Bureau, the U.S. Centers for Disease Control and Prevention (CDC), Stanford University, Harvard University’s Dean Center for Tick-Borne Illness, Bill & Melinda Gates Foundation, Chan Zuckerberg
Institute, Entomological Society of America, Microsoft, Boy Scouts of America, University of Colorado School of Public Health, Focus on Lyme, Midcoast Lyme Disease Support and Education, Center for Lyme Action and various other organizations. Olivia’s awards received include “The Bravery Award” from Stanford University’s BioADD Laboratory (as the youngest recipient), the “Gloria Barron Prize for Young Heroes;” the “Women Who Inspire” in the #beboldforchange from Nigeria’s Florence Ozor Foundation; the 2017 “People Who Inspire Award” from Ride Out Lyme; 2019 “The Power of One” award from Focus on Lyme; 2019 International Women’s Economic Forum’s award for “Young Innovators Creating a Better World for All;” the “Bluebird of Hope” from the Alex Hudson Lyme Foundation awarded for displaying courage, providing hope, and creating change. In 2017, Colorado Governor John Hickenlooper proclaimed April 8th as “Olivia Goodreau Day” in recognition of “her commitment to increasing awareness of Lyme Disease and to supporting scientists, doctors, and researchers as they work to improve treatment and find a cure.”
Olivia has held four annual medical conferences – the LivLyme Summit – since 2018, where she had the top tick-borne disease scientists, doctors, government officials and advocates from around the world speak to virtual audiences of over 1,600 guests from 34 countries. She offered free Continuing Medical Education (CME) credits for over 400 doctors to learn about tick-borne diseases. Olivia is the youngest inventor to participate in the U.S. Department of Health and Human Services, “The Opportunity Project” (TOP), a 14-week tech sprint with her TickTracker App. The app was selected by the U.S. Department of Health and Human Services as the “top tech tool” that is solving global health problems. Olivia presented her app at the White House and at the U.S. Census Bureau in 2019. In 2021, Olivia was selected as one of six winners in the U.S. Department of Health and Human Services LymeX “Education & Awareness Healthathon Challenge.”
Olivia has been an intern at the U.S. Centers for Disease Control and Prevention (CDC), Stanford University, Duke University, and the University of Southern California’s labs. Olivia is the Advisory Board Chair for Youth Advocacy for the Invisible International nonprofit and the Junior Ambassador for Lyme Disease Challenge, “Take a Bite Out of Lyme” nonprofit. She is also featured in the book, “Being a Better Human Teenager” as well as being featured in Forbes Magazine, “Tireless Teen Takes Ticks To Task,” over 20 local and national television appearances, and featured in over 25 news and magazine articles.
Olivia hopes the LivLyme Foundation will positively impact those that suffer from all tick-borne diseases. Olivia’s hobbies include sketching, reading, scuba diving, and water and snow skiing. She loves her family, including her dogs, and prioritizes having fun with her friends whenever she can. Olivia will be attending UCLA in the fall of 2023, majoring in political science with a double minor in public health and international business.
JULIA KNIGHT – TRUSTEE, PRESS AND COMMUNITY OUTREACH MANAGER – LYME DISEASE UK
Julia Knight was a Paediatric Nurse Practitioner, specialising in Children’s Community Nursing and the care of children with chronic and life-limiting conditions. Her career was cut short when she became ill in 1999 with what was at first thought to be ME but turned out to be Lyme disease that wasn’t diagnosed. Julia joined the LDUK team in 2017 as Press Manager, raising the profile of Lyme disease with many TV and radio interviews. She is currently involved in hosting Lyme disease awareness webinars for various organisations and groups throughout the UK and she became a trustee of Lyme Disease UK in 2022.