WELCOME TO Our THird Annual Virtual Event!
WALKING FOR LULU 2026
WALK A MILE IN YOUR SHOES FOR LULU!
Help us raise awareness about infection-associated chronic conditions PANS, PANDAS and POTS by joining Walking for Lulu 2026, our third annual virtual event. Participate any day during the month of October at your convenience or walk on the official awareness days for PANS/PANDAS (Oct. 9th) or POTS (Oct. 25th).
REGISTER YOUR TEAM
Register your team of any size (1 or more!) by submitting our registration form to receive a team toolkit with photo-sharing instructions for social media, award categories for best photos, buttons to wear on your walk, and a few goodies. Teams also may opt to start a fundraiser during registration. All donations to The Louisa Adelynn Johnson Fund for Complex Disease are tax deductible and will be used solely for the purpose of supporting researchers investigating POTS, PANS, PANDAS and comorbid conditions.
SHARE PHOTOS FROM YOUR WALK
Share photos on social media from your walk. Tag us on Facebook, Instagram, or X and use #walkingforlulu. Alternatively, send us a message with your photos, and we will post them on our social media accounts. Please know that by sharing photos, you are agreeing to allow us to post them on our social media accounts or website. Thank you for spreading the word about these devastating and life altering conditions! Your efforts will help to pave the way for better care and treatment for patients like Lulu.
CARE TO DONATE?
Participation in our virtual walk is free. If you would like to make an individual donation to support the work of Lulu's fund or start a Walking for Lulu 2026 team fundraiser in honor of PANS/PANDAS and POTS awareness days, please visit Charities Aid Foundation (CAF) America's website for The Louisa Adelynn Johnson Fund for Complex Disease. Every dollar counts and will help us to continue to support the vital work of researchers investigating complex, chronic illness. Thank you!
WALKING FOR LULU SPOTIFY PLAYLIST
LISTEN WHILE YOU WALK!
The Walking for Lulu Spotify playlist includes 20 songs from Lulu's record collection, which she started just months before her passing, along with a few Surf Curse singles sprinkled in. The remainder are songs that she played and listened to with family and one or two later songs that we know she would have liked if she were here with us. We will be adding new songs from Lulu's listening on October 1, 2026 to kick off Walking for Lulu this year.
Pictured: Lulu in her room in July 2021 with her record collection in the background.
WHY WE CREATED A SPOTIFY PLAYLIST
Lulu loved listening to and playing music as well as singing, and she would be so happy that we are sharing her love of music with the world. This photo (right) was taken in October 2020 when her slow, sawtoothed recovery reached its peak. By November of that year, her health declined dramatically after a change in medication, You can read more about her experiences within the health care system in our series HARD TRUTHS: How the Health Care System Treats Complex, Chronically Ill Children,