Coon Rapids MN
10-19-2025 1:45am

Strong, Brave, Hopeful: Blaine Family Turns Pain into Purpose with New Pediatric Nonprofit

Strong, Brave, Hopeful: Blaine Family Turns Pain into Purpose with New Pediatric Nonprofit

BLAINE, MN — September 2025 — The Blaine community is shining a light on the Ylvisaker family for transforming personal hardship into purpose through the launch of the Strong Brave Hopeful (SBH) Foundation—a nonprofit dedicated to supporting families navigating life with a child diagnosed with a rare neurological condition, particularly pediatric epilepsy and Ring Chromosome 20 Syndrome.

A Journey from Diagnosis to Mission

The foundation was born from the Ylvisaker family’s deeply personal experience after their son, Griffin, was diagnosed with Ring 20 syndrome two and a half years ago, at just five years old.

Ring 20 is a rare genetic epilepsy that causes recurrent, treatment-resistant seizures and developmental challenges. The diagnosis came after extensive testing at the Mayo Clinic, where clinicians used an “old-school” genetic test—called a karyotype—to identify the chromosomal ring. The disorder often goes undetected because more modern DNA panels or microarrays can miss such formations, making early diagnosis uncommon.

For Amy and Luke Ylvisaker, the news was devastating. Amy, a pediatric hematology/oncology nurse, stepped back from full-time work to become Griffin’s primary caregiver and personal care assistant. Luke, a software developer, began working from home to help manage Griffin’s care. Then, when Luke was unexpectedly laid off, the family faced yet another challenge—but also an opportunity to turn their energy toward something meaningful.

“Strong, Brave, Hopeful” became their family mantra, inspired by the courage they saw in Griffin and by the biblical verse Joshua 1:9. The couple began selling apparel—sweatshirts and tumblers—to raise funds for the foundation’s legal costs. In April 2025, the SBH Foundation officially launched as a 501(c)(3) nonprofit organization.

Bringing “Hope Boxes” to Children’s Hospitals

At the heart of the SBH Foundation’s work is its signature initiative: the HOPE Box. Each box is a comfort kit designed to help children cope with hospital stays and medical procedures through therapeutic play.

Inside every HOPE Box is a toy EEG kit that allows children to practice attaching wires to a plush HOPE Dog—a cartoon version of the family’s golden retriever, Lola—so they know what to expect during real medical testing. The boxes also include comforting items and playful tools that bring a sense of normalcy and empowerment during difficult hospital experiences.

The foundation has already delivered dozens of HOPE Boxes and set an ambitious goal to provide 100 of them this year to children at Children’s Minnesota Hospital – Minneapolis, M Health Fairview Masonic Children’s Hospital, and directly to families across the United States. Requests have even come from families overseas.

“It’s about giving kids and parents something tangible—something that helps them feel prepared, seen, and not alone,” Amy said in a recent community feature shared by the Blaine Police Department’s “Best of Blaine” Community Spotlight.

Community Support and Growing Impact

The Ylvisaker family’s mission has quickly captured hearts throughout Blaine and beyond. Alongside their daughter Mia, age 9, they have engaged community members through fundraising and awareness events, including participation in the Minnesota Epilepsy Walk and the foundation’s annual SBH Golf Classic, which exceeded expectations in both turnout and donations.

Funds raised through Strong Brave Hopeful Apparel Co. and community campaigns—such as the HOPE Box Match Challenge—have allowed the foundation to expand its outreach. Looking ahead, the Ylvisakers hope to provide financial assistance for medical equipment like seizure monitors, support for genetic testing, and respite programs for caregivers of medically complex children.

Their vision is simple yet powerful: to ensure that no family facing a rare neurological condition feels alone.

A Message of Strength, Bravery, and Hope

While Ring 20 syndrome remains rare and without a clear cure, the Ylvisaker family’s work has already made a measurable difference—helping families feel supported and less isolated.

Their journey reflects the very values their foundation champions: strength in adversity, bravery in uncertainty, and hope for tomorrow. As Blaine continues to celebrate community members who uplift others, the SBH Foundation stands as a powerful example of resilience turned into purpose.

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