Spotlight on the Elinore Nudelman ALS College Savings Program
Michael “Mike” Canepa passed away in December of 2023 after a several-year battle with ALS. His daughter, 12-year-old Isabella “Izzy” Canepa, is the first recipient of the new Elinore Nudelman ALS College Savings Program. This program honors the legacy of those lost to ALS, while securing the educational future for children who have lost a parent to the disease through a funded 529 college savings plan.
Meet Izzy, the First Program Recipient
At 12 years old, Izzy has many hobbies and interests. Her favorite subject in school is science, and she is also a skilled baker and chef. Hot dogs with potatoes were a shared dish between her and her dad that she continues to make today, and she enjoys tackling baking challenges like gluten-free treats. Highlighting a keen understanding of her father’s illness, Izzy recently completed a project about ALS for school, acting as an advocate by building awareness of the disease among her peers. Next year as an 8th grader, she looks forward to mentoring incoming 6th graders who will navigate middle school for the first time.
Izzy’s mother, Christine Acuna, first met Mike twenty years ago at their shared apartment building in Eugene, OR – he was her extroverted upstairs neighbor. They became inseparable and ultimately created a family together. Despite separating about one year before Mike’s passing, Christine and Mike continued to support each other, co-parenting their children (Izzy and Kian) amicably.
Mike’s ALS Journey
As a healthcare professional, Christine acted as Mike’s advocate throughout his ALS journey, with the added support of his family and friends. Before his ALS diagnosis, Mike went to several clinics who consistently misdiagnosed him, an experience that many people living with ALS share. Mike eventually had an x-ray that confirmed his diaphragm wasn’t moving. After months of fighting for the appropriate care, a neurologist diagnosed Mike with ALS. While he finally had an answer to explain his symptoms, the journey ahead was difficult. Christine admitted, “There’s no right way to process [ALS].”
Mike and his family leaned on ALS Northwest for support. He became a regular at the Eugene ALS Support Group, led by Mary Rebar. Christine shared, “ALS Northwest really supported Mike. It became a constant for him, and the one thing he couldn’t let go of.”
Today, Christine, Izzy, and Kian draw upon many positive memories of Mike, remembering him as “the dad who could fix anything” and a “big kid at heart,” with interests that ranged from fishing and rock collecting to Legos, Beanie Babies, and Funko Pop! figures. Izzy appreciated her dad’s love of rock collecting and would often bring him pockets full of pebbles for him to evaluate. Mike was also an avid comic book reader and collector, frequently parking himself in the back room at St. Vincent de Paul (he was a regular) to browse their latest comic inventory.
Mike was a dedicated father and a helper in his community, with a knack for good conversation. The whole family trusted him deeply and benefitted from his curiosity and respect for others. Mike’s son Kian shared, “He was a lot of peoples’ moral compass… he didn’t let his illness stop him from helping others.”
What is the Elinore Nudelman ALS College Savings Program?
This unique program offers the establishment of a funded 529 College Savings Plan through the Oregon College Savings Program for children who have lost a parent or guardian to ALS. A 529 plan is a state-sponsored investment that enables recipients to save money for a named child/beneficiary and pay for education expenses. Recipients can then withdraw funds tax-free to cover nearly any type of college, apprenticeship, or vocational education expense.
Mike’s family discovered the program through Mary Rebar, who had attended Mike’s recent celebration of life and thought Izzy might benefit. Mary also knew Mike would want to support his children in any way he could.
After a decade of advocating for Mike’s wellbeing during his ALS journey, with limited capacity to plan for the future, Christine shared that “the [savings plan] supporting Izzy in this way brings a lot of peace.” Both her and Mike had been focused on survival and necessities for the immediate future, and she admits that “College just wasn’t something we were thinking about – we were focused on being present every day.”
Mike had also wanted to sell his vast comic book collection for Izzy’s education, but never got the chance. Christine added that “[The Elinore Nudelman ALS College Savings Program] is a great motivator – we can honor Mike by selling these comics and putting that money into the account.” Plus, friends and family can contribute directly.
Mike might have guessed Izzy would become a professional chef, but Christine knows he would have supported Izzy in any pursuit – be it neurology or baking.
Michael Canepa is survived by his ex-spouse Christine and two children, Izzy and Kian, who live in Springfield, OR. His parents and siblings live in Reno, NV.
Through the gift of education, we aim to empower the next generation with hope, opportunity, and the tools to succeed.
Do you have or know a child who lost a parent or guardian to ALS? They may be eligible for this program. Find all eligibility guidelines at https://alsnorthwest.org/college-savings/
To apply or to learn more about how you can support the Elinore Nudelman ALS College Savings Program, please contact us at careservices@alsnorthwest.org or (503) 512-5141.