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New state-run scholarship helps children whose parents died of ALS • Oregon Capital Chronicle

Children from Oregon and Southwest Washington who lost their parents to Lou Gehrig’s disease can now qualify for college scholarships through a state-run college savings program.

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

Although most people are diagnosed in middle age, the nonprofit estimates that about 7% of people with ALS have a child under the age of 18. These children face the loss of a parent at a young age, as the average life expectancy for someone after diagnosis is three years.

“We really felt there was a need to better support these families, especially after losing a loved one with ALS, as they often lose the income and support of a parent or guardian, as well as emotional support,” said Adams.

Now, these children will be able to receive money from the organization to attend college or trade school through the state-run 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 income tax credit of $180 for a single filer or $360 for a joint filer.

The grant has hit hard on 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 battling the disease, he repaired computers and bought and sold comic books to earn extra money and contribute to his children’s college education, but Acuna still doubted she would ever be able to put together a college fund for Izzy.

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

Izzy, who will enter eighth grade next year, is interested in becoming a neurologist. Her father’s illness has sparked an interest in learning more about neuroscience and how to help people with ALS. She is also a brilliant chef and may be 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’s nothing 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 groundbreaking effort ensures that children who lose a parent or guardian to ALS do not also lose the opportunity to benefit from vocational training or college,” Read said in a statement.

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

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

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