Heroes Unite fundraiser Aug. 3 Cure sought for Maple Lake preschooler with rare disease

By Brenda Erdahl

At five years old Hoyt Lambert is a happy preschooler with a typical love/hate relationship with his little sister Millie and an abounding adoration for his new baby brother, Emmett. But life isn’t typical for Hoyt or his family.

Ongoing neurology and ophthalmology appointments, rehabilitation, and yearly procedures take up much of their time. Hoyt has a rare disease called KAND (KIF1A Associated Neurological Disorder). The disorder is so rare, only about 500 people in the entire world have been diagnosed. Degenerative and progressive, it can rob people, including children, of their ability to walk, talk, feed themselves and see.

It’s for those reasons Hoyt’s family is so desperately searching for a cure.

On Saturday, August 3, the Lambert family will hold their third bi-annual fundraiser, Heroes Unite, at the Community Park on Division Street in Maple Lake in honor of Hoyt and to raise money for KIF1A.org, the non-profit relentlessly fighting to find a cure before it’s too late.

The event begins at 9:30 a.m. with an all new 5K run followed by the Tiny Hero Dash. Children are invited to wear their best superhero getups (or Superhero Hoyt t-shirts) and will be provided with silly string and squirt guns to fire at lurking villains as they run around the park. This family friendly event is geared toward the youngsters with superhero themed games, a bounce house and face painting. There will be plenty of food and a silent auction.

In its inaugural year the event attracted close to 300 people and raised $33,404 for the cause. Since then, the location of the event has alternated between Maple Lake and Hoyt’s mother Bryn’s hometown in North Dakota. In total, the Lamberts with the help of friends, family and community have raised $78,750.

Since that first fundraiser, the KIF1A.org with help from another agency has developed an experimental treatment. Unfortunately, Hoyt is not a candidate Bryn said, but it’s still a promising advancement.

“The organization is growing, and every dollar is raised by people like me. We apply for grants, we apply for funding, but the majority of funds that come to KIF1A.org are from friends and family supporting us and our cause. So, these types of events are extremely important, otherwise we’re not going to find a treatment, we’re not going to find a cure,” Bryn said.

But funding isn’t the Lambert’s only objective.

“Our biggest struggle is education. We want people to know about this disease to advance this cause,” she said.

While there is still a lot to learn about KAND, awareness is growing and it’s because of events like Heroes Unite. When Hoyt was first diagnosed in the winter of 2020, he was one of just 200 cases in the world. Now 500 have been identified to have the disease and that is because of genetic testing and more insurance companies that are willing to cover that testing, Bryn said.

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