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5 Questions: Alzheimer’s benefit today at Heritage Harley

Concord Insider's Ben Conant and Keith Testa

(SAMANTHA GORESH / Monitor staff)

Concord Insider's Ben Conant and Keith Testa (SAMANTHA GORESH / Monitor staff)

Julie Rumfelt knows the profound toll Alzheimer’s can take on a family, because she’s lived it. Two of her sisters died from the disease, which attacks a person’s memory – one at age 59, the other at 45. She wants people who have been affected by the disease to know that help exists. First step: education.

That’s why she and others have helped organize a benefit today, from 11 a.m. to 3 p.m. at Heritage Harley Davidson in Concord. The event, which will feature barbecue, drinks and music, is meant to spread awareness about Alzheimer’s, provide strategies to cope

with it and raise money for research toward a future cure.

What do you hope the benefit will do? I hope it will bring awareness to people in the community about just how important it is to try to find a cure for the disease. More and more people are getting diagnosed with it. There are drugs that slow the progression, but a lot of people still need information about treatment options they or loved ones have, and also just to know that there is support out there for them.

Are there common misconceptions about Alzheimer’s that you hear? Yes. Some people think it’s just something that you get when you’re old. Not true – people in their 20s are getting diagnosed. People are getting younger and younger with the disease.

What is your personal experience with the disease? My two sisters suffered from front temporal lobe Alzheimer’s, which is a very intense form of the disease. When someone is diagnosed with that, they typically have a three- to five-year life expectancy, whereas with other forms they may have more like 15 to 20. Several of my family members also suffer from ALS, also known as Lou Gehrig’s Disease.

What advice would you give to someone who has or knows of someone who has been diagnosed? You need to have an advocate in place, because as time goes on you lose the functioning of your mind. It is so important to find someone who can speak for you, that is fighting for your best interests. Also, dealing with this disease is very hard, but you go on and you just have to make the best of each day and put it into positive things. That’s what I do, I go out and help people each day. You’ve got to because if you didn’t, you’d go crazy.

Besides the benefit, where can people go for information or support? The Alzheimer’s Association’s local number, in Bedford, is 606-6590. There is also a support group that meets the first Wednesday of every month in Auburn. The number for that is 463-5736.

(Jeremy Blackman can be reached at 369-3319, or on Twitter @JBlackmanCM.)

Correction: A previos version of this article misstated who in Julie Rumfelt's family suffered from ALS. She does not suffer from ALS.

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