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The Youth Movement to Eradicate Alzheimer's Disease

by Dawn Papandrea

Ask anyone and, chances are, Alzheimer's has had a profound effect on the life of someone close to them. It's not just an "old" person's disease. It affects children and grandchildren, families and friends, and anyone who's helplessly watched their loved one slip away. With more than five million Americans currently battling Alzheimer's, it's good to know that the next generation is fighting back. Meet some amazing young people who are raising awareness and hoping for a cure.

Teen Power
Neha Chauhan's interest in Alzheimer's disease began with a high school science research project at age 15. “I learned a lot about the disease and about how it impacted my community. There are 15,000 people suffering from Alzheimer's disease in my hometown of Staten Island, New York," she says. Neha wanted to do something, so she wrote a letter to the Alzheimer's Foundation of America (AFA) and expressed her interest in engaging teenagers in their mission. “I found AFA's focus on care especially important," she says.

Just days after sending her letter, Neha received a phone call from the CEO of the Alzheimer's Foundation. “He expressed interest in my vision, and had several ideas of his own. Together, we worked to create AFA Teens, the teenage branch of the Alzheimer's Foundation of America." Today, the group is growing strong with local chapters around the country, and a scholarship contest. “We need young people to step up and have a voice for those who do not. Young people are more connected than ever before, and, as a result, they are able to make a bigger impact than ever before," says Neha. “It comes down to how you want to use your passion toward the cause."

AFA Teens is helping young people like Katie Henley, this year's AFA Teens for Alzheimer's Awareness College Scholarship winner, embrace their passion for this important cause. After Katie lost her dad (that's him pictured with her when she was young), she turned her grief into an opportunity to educate others about early-onset Alzheimer's. “He was diagnosed at 40 and almost four years to the date of that diagnosis, he died. The most profound thing this disease imparted on me was that it doesn't in any way allow its victims to fight." That's why, she says, it's up to others to fight for them.

To do her part, Katie felt it was important to share her story of loss and learning. “My intention with the essay was more of honoring my dad by telling his story. I feel very honored that it was chosen because it has provided me with the opportunity to continue telling people that this isn't only an old person's disease. I cannot express how many times I've told people my dad died of Alzheimer's and they ask, ‘Was he really old?' No, he wasn't."

Katie will be attending Colorado State University in Ft. Collins next year, and plans to get involved and join the local Alzheimer's chapter there. She also takes part in memory walks, which she says are a great way to raise awareness.

“I truly feel that this is a worthy cause to fight for not only because it affected my family, but I don't want other young families to go through what mine did."

Tween Hope
Kelly Joanne Anderson was just 10 when she lost her grandfather, Lyndell Anderson, to Alzheimer's. Despite her young age, Kelly was old enough to comprehend how the disease worked. The day after his death, she wrote the following:

“Papa Lyn had been a wonderful grandpa. I loved to go to Kansas City to visit him. I always thought it was funny how he always fell asleep in his recliner chair. A few years ago, he had to go to the VA hospital in Cameron, Missouri. He had Alzheimer's. Alzheimer's is a disease that makes you forget about things. Sometimes we would visit him. He never said much and he was different than before. Every time I saw him in the VA I would think, this disease is horrible. I wish I could do something about it."

After he passed, Kelly did just that. She joined her mother and grandmother as a quilter for The Alzheimer's Art Quilt Initiative (AAQI), a national organization whose members make and sell quilts to raise money for a cure. The now-11 year old made a quilt in memory of her grandfather titled “My Lady Bug." She says it took her a whole week to complete. “I feel really good about making the quilt and I wanted to help the cause," says Kelly. Her quilt sold for $100 at auction, but the buyer kindly returned it to her.

Kelly wants the world to know that young people understand more than they're given credit for. “I think it's important for young people to know about Alzheimer's because we could really make a difference just by visiting a VA hospital or making a quilt," she says.

To date, AAQI has received almost 5,000 donated quilts since it began in 2006, with Kelly being one of the youngest donors.

Youthful Prayer
Everyone thinks of Alzheimer's as stealing memories from grandparents, but it steals memories from grandchildren, too, says Stacie Ruth. At age 17, Stacie founded Bright Light Ministry, a Christian organization that, among other things, reaches out to hurting families in crisis, particularly those fighting Alzheimer's. She should know, having grown up with a grandparent affected by the disease.

While 17 is a remarkably young age to start such an initiative, her commitment to the cause actually began earlier in her life. At 15, Stacie wrote the book Still Holding Hands, which chronicles her grandparents' faith and love in the face of Alzheimer's. The book also offers families ways to cope with the disease.

Today, she continues her work through her organization and, most recently, through her music. Stacie recorded "Second Childhood Children" as a tribute to caregivers and those suffering from Alzheimer's. “Music ministers greatly, no matter the stage of Alzheimer's. It's one way to share some light in a dark situation, and include both the patients and the patients' families," she says. In addition, Stacie tours the country speaking at various events for the Alzheimer's Association and other organizations.

Anyone who's searching for a way to fight Alzheimer's disease can take a cue from one of these amazing youngsters. Their compassion for others and commitment to making a difference defies their age. Perhaps one day they can tell their grandchildren about a disease they once helped fight, and hopefully, it will be but a distant memory.

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