Team Sofie at the Philadelphia Marathon

The keystone of our inaugural fundraiser was the Philadelphia Marathon, run by Sofie’s mom Erin at the end of November. Through this effort, Team Sofie raised $29,720 for cystinosis medical research. We were totally blown away by how our community showed up in-person and virtually to lend their support and cheer us on.

Every mile of the marathon was dedicated to an individual living with cystinosis. Learn more about some of the incredible members of this community below.

Team Sofie Marathon Dedications

  • Mile 1: Brooke Emerson

    Age: 8
    Location: Hammonton, NJ
    Fun fact: “When I grow up, I want to be a veterinarian because I love animals so much, and also so I can bring my cat Nicky to work with me every day.”

  • Mile 2: Ezekiel “Zeke” Shields

    Age: 2 years old
    Location: Nashua, NH
    Fun fact: Zeke loves to lick the salt off his crackers and then feed them to the birds!

  • Mile 3: Tina Flerchinger

    Age: 19
    Location: Clarkstown, WA
    Fun fact: Tina is enjoying her first year of college, she’s studying psychology, and she loves to swing dance.

  • Mile 4: Samuel Jenkins

    Age: 13
    Location: Salt Lake City, UT
    Fun fact: Loves otters, hiking, and making stop motion Lego movies.

  • Mile 5: Lars Jenkins

    Age: 10
    Location: Salt Lake City, UT
    Fun fact: Loves reading, Minecraft, and wants to be an engineer.

  • Mile 6: Aidan O’Leary

    Age: 6
    Location: Winnetka, IL
    Fun fact: Aidan wants to be a paleontologist when he grows up.

  • Mile 7: Tyler Joint

    Age: 34
    Location: Jacksonville, FL
    Fun fact: Tyler has 4 kidneys but only 1 works.

  • Mile 8: Jordan Janz

    Age: 23
    Location: Consort, Alberta, Canada
    Fun fact: Jordan loves to snowboard.

  • Mile 9: Jake Krahe

    Age: 16
    Location: Medina, OH
    Fun fact: Jake likes to trade stocks.

  • Mile 10: Hayden K

    Age: 5 years old
    Location: Denver, CO
    Fun fact: Her favorite food is Chick-fil-a and she has eaten 25 nuggets in a single sitting.

  • Mile 11: Emma Suetta

    Age: 9
    Location: Etna, CA
    Fun fact: Emma loves to cook, even though she doesn’t eat by mouth.

  • Mile 12: Ethan Fenn

    Age: 9 years old
    Location: Hunter Valley, Australia
    Fun fact: Ethan is a black belt in karate.

  • Mile 13: Josie Kanupke

    Age: 5 years old
    Location: Crown Point, Indiana
    Fun fact: Josie already knows the names of her 6 future children and wants to be a chef and a ninja when she grows up.

  • Mile 14: Charlie Simpson

    Age: 4
    Location: New Orleans, LA
    Fun fact: Loves bugs (real and fake; dead or alive); hates to wear pants.

  • Mile 15: Shannon Keizer

    Age: 33
    Location: Caledonia, MI
    Fun fact: Shannon is the proud godmother of 4 children, one of whom has cystinosis.

  • Mile 16: Henry Sturgis

    Age: 16
    Location: Sandpoint, Idaho

  • Mile 17: Isaac Andrews

    Age: 7
    Location: Cottage Grove, MN
    Fun fact: Isaac found a love of the Rocky movies at a very young age. He knew all the words to Eye of the Tiger when he was 2 years old!

  • Mile 18: Henley

    Age: 2 years and 9 months
    Location: Gilbert, AZ
    Fun fact: Henley was officially diagnosed with cystinosis the day before the first patient received a stem cell transplant that we hope will be the cure!

  • Mile 19: Hadley

    Age: 12
    Location: Boise, ID
    Fun fact: Hadley drinks an average of 2 gallons of water each day.

  • Mile 20: Landon Hartz

    Age: 12
    Location: Pittsburgh, PA
    Fun fact: Landon loves animals and can’t get enough of zoos and petting zoos!

  • Mile 21: Jenna McCall

    Age: 17
    Location: Sacramento, CA
    Fun fact: Jenna is a senior in high school and loves fashion, make-up, and Harry Styles.

  • Mile 22: Patrick

    Age: 17
    Location: Sacramento, CA
    Fun fact: Patrick is a senior in high school and loves clothes, shoes, and shopping!

  • Mile 23: Courtney Penner

    Age: 29
    Location: Edmonton, Alberta, Canada
    Fun fact: Courtney used to be a recreational therapist working with Alzheimer’s and dementia patients.

  • Mile 24: Jacob Seachord

    Age: 24
    Location: Bremerton, WA
    Fun fact: Jacob was patient #3 in Dr. Cherqui’s stem cell and gene therapy trial!

  • Mile 25: Seth

    Age: 10
    Location: Alberta, Canada
    Fun fact: Seth is thriving even as he lives with cystinosis. He skis, mountain bikes, skates, hikes, climbs, canoes just as fast as other kids (and sometimes faster!)...he laughs and plays hard and really truly lives life to the fullest.

  • Mile 26: Sofie Sos-Finucane

    Age: 4
    Location: Philadelphia, PA
    Fun fact: Sofie was born on the 4th of July and treats every day like a celebration.