New Oregon Scholarship Helps Students whose Parents Died of ALS

Oregon and southwest Washington children who lost parents to Lou Gehrig’s disease can now qualify for scholarships through a state-administered college savings program.

About 600 people in Oregon and southwest Washington receive support for amyotrophic lateral sclerosis or ALS, a progressive disease that attacks nerve cells that control muscles throughout the body, said Cassy Adams, care services director for ALS Northwest.

While most people are diagnosed in middle age, the nonprofit estimates that around 7% of people with ALS have a child younger than 18. Those children face losing a parent young, as the average life expectancy for someone after diagnosis is three years.

“We really felt like there was a need to be able to better support those families, particularly after the loss of a loved one with ALS because they are often losing a parent or guardian’s income and support, emotional support as well,” Adams said.

Now, those children will be able to receive money from the organization to put toward college or trade school through the state-administered Oregon College Savings Plan, which allows parents or guardians to set up investment accounts for their children’s future higher education. People who contribute to the savings plans can receive an annual state income tax credit of $180 for a single filer or $360 for a joint filer.

The scholarship lifted a weight for Christine Acuna of Springfield, whose 12-year-old daughter Izzy Canepa is the first recipient. Izzy’s father, Mike Canepa, died last December after battling ALS for several years. While fighting the illness, he fixed computers and bought and resold comic books to earn extra money to contribute to his children’s college educations, but Acuna still doubted she would ever be able to put together a college fund for Izzy.

“It’s really helped us just be able to breathe and know that there’s hope in her future,” Acuna said. “It’s one less struggle amongst the many other things that come with grief and learning how to live without your partner and your parent.”

Izzy, who will start eighth grade next year, is interested in becoming a neurologist – her father’s disease sparked an interest in learning more about neuroscience and how to help people with ALS. She’s also a brilliant cook and potentially interested in studying food science.

“She can literally cook anything,” Acuna said. “She can cook full turkeys in the oven. She can make cakes. There isn’t anything that she can’t cook.”

ALS Northwest was aware of Oregon’s College Savings Plan and has a personal connection with Treasurer Tobias Read, who lost his father to ALS and has become a regular donor. With a contribution from the family of Elinore Nudelman, a Portland philanthropist who died of ALS in 2005, the organization launched its scholarship program this year.

“Education is a stepping stone to a better life, and this pioneering effort ensures that children who lose a parent or guardian to ALS don’t also lose the ability to benefit from career training or college,” Read said in a statement.

It’s the first time the Treasury has worked directly with an organization to set up scholarship funds, though marketing and communications director Kasey Krifka said the agency is open to partnering with other nonprofit organizations in the future.

To qualify, a child must be 17 or younger and have a parent or guardian who died from ALS while living in Oregon or Cowlitz, Clark, Klickitat, Pacific, Skamania or Wahkiakum counties and was registered with ALS Northwest. An initial award amount, which varies depending on the child’s age, will be deposited in a 529 College Savings Plan, an investment account that any parent or guardian can set up for a child. Money from those plans can be withdrawn tax free to pay for educational costs, including college tuition and fees, apprenticeships and vocational schools.

by Julia Shumway, Oregon Capital Chronicle

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