Community Fundraiser Supporting Two Local Children

Submitted by Mary McDaniels

A community fundraiser to support local twin boys, Grady and Jace Binder, who are

battling the rare genetic disease Pantothenate Kinase-Associated Neurodegeneration

(PKAN), will be held Saturday, Aug. 16, at Pine Crest Golf Course in Dallas.

PKAN is an extremely rare genetic disorder, affecting 1-3 individuals per million

worldwide, that causes iron accumulation in the brain, impacting motor function and

progressing over time. Grady and Jace, sons of Dallas native and 2000 Barron graduate

Erin (Lindberg) Binder and her husband, Dustin, were diagnosed in March 2023. Erin is

the daughter of Steve and Vicki (Bisonette) Lindberg.

Since their diagnosis, the boys have experienced significant challenges, losing their

ability to speak, walk unassisted, and eat regular food. They now rely on wheelchairs for

mobility. Jace is currently g-tube-fed and battling severe dystonia flares in his oral

muscles. The family is pursuing investigational therapy CoA-Z, developed at Oregon

Health & Science University (OHSU), which aims to address the metabolic defect at the

heart of PKAN.

The fundraiser kicks off with an 8 a.m. registration for a 9 a.m. shotgun start golf

tournament – a four-person scramble with chances to win prizes on various holes.

Following the tournament, golfers will enjoy a pulled pork lunch.

The community is invited to join for a free-will donation pulled pork lunch. Additional

activities include a live auction conducted by Swede Knutson, bucket and 50/50 raffles,

and sales of t-shirts that were custom-designed and made with love by Erin’s cousin,

Dan Kirby, owner of Blue Label Designs in Eau Claire. Pine Crest Golf Course, located

at 404 16 ½ St. in Dallas, will also offer its regular menu and beverages.

Organizers extend immense gratitude to all who have already contributed. Event

Sponsors include Vanguard Agency Insurance, Maxine’s, Poskin Lake Resort, the Greg

and Jen Idelkope family, Thrivent, Lindberg Heating & Cooling, Mary McDaniels in

memory of Anne McDaniels, Pine Crest Golf Course, Sportsmen’s Bar & Grill, the Lac

Courte Oreilles Band of Lake Superior Ojibwe, and the Yamada family – Norm, Kathee,

Jon, Shane and Holly.

For those interested in signing up for the golf tournament, becoming a sponsor,

donating an auction item, or for any questions, please contact Kate Lindberg by call or

text at 715-651-8611, or email miraclesforgradyandjace@gmail.com.