No results found. Please try modifying your search.

On GivingTuesday on Nov 30, Fuel Hope for Three-Year-Old with Rare Illness

Emily Progin, PR and Communications Coordinator

[email protected] / 800.642.8399

Release: Immediate


Learn How You Can Help the Lambert Family with the Cost of a Van for Ethan

PINCKNEY, Mich.—On Tuesday, November 30, communities across America and around the world will participate in the single largest day of giving of the entire year: GivingTuesday. The family of Ethan Lambert, a Pinckney three-year-old living with a rare genetic illness, is hoping that the community will open their hearts to help them reach an epic goal: covering the cost of an accessible van to bring greater hope and mobility to Ethan’s future.

In February 2017, Kassondra and William Lambert learned that their son, Ethan, was one of only 300 people in the world with the rare KIF1A Associated Neurological Disorder, or KAND. Living with KAND, Ethan faces a range of symptoms that will impact his childhood and the rest of his life, including progressive issues with his development, speech, mobility, balance, strength, and eyesight.

In addition to leg braces, a walker, a stroller, regular therapy sessions, and ongoing medical co-pays, Ethan will require an accessible van to safely attend therapy sessions, appointments, and community events. While an accessible van is critical to Ethan’s health and future, the Lamberts’ insurance does not consider it “medically necessary,” leaving the family with a massive out-of-pocket cost for a van.

In September 2021, they turned to the national nonprofit Help Hope Live to start a van fundraising campaign that would be medically verified, tax deductible, and responsibly managed. The response from the community has been outstanding: they have raised $22,000 in less than two months.

“Thanks to this community’s support, our family has been able to dream bigger than ever. Having a van will mean the possibility of new wheelchair options, such as a power chair, to improve Ethan’s daily life. In the future, we want to share our love of travel and exploration with him, too.”

On GivingTuesday, donations in honor of Ethan will go even further: the fundraising nonprofit will cover the 2.65% credit card fee for the entire 24 hours of November 30. To participate, make a donation online at:

Donations are tax deductible to the extent allowed by law, and all funds raised will be managed by the nonprofit to cover verified medical and related expenses. Help Hope Live verifies medical and financial need for every patient.

Anyone who is unable to donate but wants to get involved in Ethan’s fundraising efforts can call 800-642-8399 and ask for Jen Smilg, Client Services Coordinator for Ethan’s campaign.

Help Hope Live is a national nonprofit that specializes in engaging communities in secure, tax-deductible fundraising campaigns for people who need a transplant or are affected by a catastrophic injury or illness. Since 1983, campaigns organized by Help Hope Live have raised over $158 million to pay patient expenses. ###

Written by Emily Progin