Help for the Hoffman Family

Update: Zach and Mackenzie are so grateful for the generosity everyone has shown. They will be using the donations to convert the bathroom into one that is handicapped accessible.

Zach and Mackenzie Hoffman reside in Paris, Michigan with their 9 month old son, Henry. Two years ago they purchased their first home and began to fulfil their dreams. In the spring of 2023 Zach was laid off from his job and began to experience issues with his balance. Early summer brought the diagnosis of Gerstmann-Straussler-Scheinker disease while Mackenzie was 8 months pregnant with their first child. Zach's father, Paul, was diagnosed with it the week their first child, Henry, was born. Zach first began to exhibit symptoms in 2021. Gerstmann-Sträussler-Scheinker (GSS) disease is a rare genetic degenerative brain disorder. The symptoms, the progression of the disorder, and the overall severity can vary greatly among affected families and individuals. This is true even among members of the same family. A common symptom is a progressive loss of coordination that may present as unsteadiness of gait, difficulty walking, and clumsiness. As the disease progresses, other symptoms become apparent including dementia, in which there are worsening problems with thought, cognition, memory, language, and behavior. The disease is fatal within 2-10 years.

Zach was one of the 56 patients accepted into a clinical trial with study sites in Los Angeles, Cleveland, Barcelona, Boston, Germany and Canada. He travels there every two weeks to have a lumbar puncture and is administered either a placebo or medication, the family is not told which he's receiving. While the clinical trial is promising it is in its first phase and the treatment in the beginning stages will not save Zach's life. Zach states he is participating in the trial in the event his son is diagnosed with it later in his life. Henry, 9 months old, has a 50% chance of inheriting this genetic disease. Science Magazine is following the Hoffman journey as they navigate the unknown and hope to provide answers and treatment for future generations and have featured them in the article below.

Zach was laid off from his job in 2023 and is unable to return to work due to his rapidly decreasing physical abilities. Mackenzie provides 100% of Zach's personal care and is unable to work as this care has to be provided 24/7.

With the support of our community we can enrich their lives and provide stress relief for Zach and Mackenzie by taking some of their financial burden away. Whether you're able to donate or simply share please know that the family is humbled and appreciative.

https://www.science.org/content/article/can-new-drugs-stop-deadly-set-brain-eating-diseases