Eight-year-old Tate Koester of Gladbrook will be taking part in the Shine a Light NF Walk in Cedar Falls later this month to raise awareness of neurofibromatosis. Koester was first diagnosed with the rare genetic disorder when he was just over two years old. Contributed photo

On September 18, ‘Team Titans For Tate’ will gather at Gateway Park in Cedar Falls for the Shine a Light NF Walk, the signature fundraising event of the Children’s Tumor Foundation. Titans For Tate joins the neurofibromatosis (NF) community from across Iowa to bring neurofibromatosis out of the shadows and raise critical funds for research.

In addition to the activities and walk at the park, celebrations will also take place virtually, making for a unique and festive experience for the broader NF community who want to Shine a Light on NF, but cannot attend in person.

Titans For Tate is a group of friends and family that have come together to support eight-year-old Tate Koester of Gladbrook who lives with NF, a rare genetic disorder.

The group works toward improving awareness of NF and raising money to donate toward NF research.

Tate was diagnosed with neurofibromatosis type 1 at 2 ½ years old when an eye doctor discovered an optic glioma on his right eye. Over the past six years, he’s had multiple MRIs to monitor the tumor’s growth.

Just this summer, Tate reached the milestone of eight and escaped the growth years for optic gliomas. NF is new to a lot of individuals and Tate and his family have done a great job in meeting people and spreading awareness of NF through their community. Tate continues to work hard in school and recently started second grade.

“The walk helps me raise money for the doctors to stop NF and it is important to my family,” says Tate.

Many people in the Gladbrook community support Tate. The walk is a chance for them to do their part.

“Tate is a celebrity around home. Tate shirts are all around the community and everyone seems to know him,” says Beth Koester, Tate’s mom. “The walk brings the NF community all together and reminds us that while we fight our own NF battles at home, we are not alone. There is always someone to reach out to.”

While the FDA recently approved the first-ever treatment, Koselugo (selumetinib), for inoperable plexiform neurofibromas, there is no cure at this time for NF.

Clinicians and scientists are optimistic that with funding for more research, more actionable treatment options to improve the lives of the 2.5 million people living with NF will be attainable. Events like the Shine a Light NF Walk are instrumental in advancing this critical research.

The Children’s Tumor Foundation is a leader in the fight against this genetic disorder that causes tumors to grow on nerves throughout the body and affects 1 in every 3,000 people of all populations, and identifies NF Heroes as those who have demonstrated remarkable courage and a positive spirit living with NF.

WHAT: Shine a Light NF Walk

WHO: Open to the public. Registration is required for individuals, teams, and corporate groups.

WHERE: Gateway Park in Cedar Falls, Iowa

WHEN: September 18, 2021

Check-In – 9:00 am

Walk Begins – 10:00 am