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Toomey, Congressional task force raise awareness of Alzheimer's Disease

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Raising awareness

The Congressional Task Force on Alzheimer's Disease, established in 1999, aims to advance research and public awareness of the disease by bringing it to the forefront of the congressional agenda. An estimated 5.4 million Americans live with Alzheimer's.

The task force, with support of the Alzheimer's Association, worked to pass the National Alzheimer's Project Act (PL-111-375) and has helped to secure money for research at the National Institutes of Health.

Its Pennsylvania members are Republican Sen. Pat Toomey of Lehigh Valley, Democratic Reps. Mike Doyle of Forest Hills and Robert Brady of Philadelphia, and Republican Reps. Michael Fitzpatrick of Bucks County and Joseph Pitts of suburban Philadelphia.

Formed in 1980, the Alzheimer's Association is a voluntary health organization. For information: www.alz.org or 800-272-3900.

Source: Alzheimer's Association

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By Salena Zito and Chris Togneri

Published: Sunday, Jan. 26, 2014, 9:30 p.m.

Since his father was diagnosed with Alzheimer's disease a little more than a year ago, U.S. Sen. Pat Toomey appreciates even simple conversations.

“We have been very lucky that the progress is slower than I feared it might be,” the Lehigh Valley Republican said. “I can very often have a conversation with him without any signs of the devastating disease.”

Toomey last week said he will join the bipartisan Congressional Task Force on Alzheimer's Disease, which works to raise national awareness about the disease and secure money for research. The disease is the most common form of dementia, or loss of brain function, that affects memory, thinking and behavior.

His family's experience with Alzheimer's — Toomey's grandmother and two aunts died of the disease — inspired him to take a more active role in the fight for a cure.

An estimated 5.2 million Americans live with Alzheimer's, including 280,000 people diagnosed in Pennsylvania. The state has the fifth highest total in the country, according to the Alzheimer's Association. Officials estimate 120,000 more Pennsylvanians, mostly older than 65, have undiagnosed Alzheimer's.

Clay Jacobs, vice president of programs and services for the association's Greater Pennsylvania Chapter, applauded Toomey's involvement, saying politicians and other public figures play a crucial role in raising awareness.

“Families often turn to elected officials to see what services are available,” Jacobs said. “Having them speak for the cause ... is a huge victory.”

Alzheimer's deaths are rising rapidly.

Since 2000, advances in medical research resulted in lower mortality rates for people with breast cancer, prostate cancer, heart disease, stroke and HIV. Deaths caused by Alzheimer's rose 68 percent during the period, according to the Alzheimer's Association.

“We've waged battles on diseases, and statistics show successes in those battles,” said Dr. William Klunk, co-director of the University of Pittsburgh's Alzheimer's Disease Research Center. “Alzheimer's has just been a difficult battle to wage.”

Klunk and Dr. Chester Mathis at Pitt developed Pittsburgh Compound B, or PiB, a radioactive imaging dye that enables doctors to detect whether a brain is likely to become afflicted by Alzheimer's before symptoms present.

“We're hopeful treatments that are about to go into trials will be effective, but we don't know that yet,” Klunk said. “… It's fascinating, and it's frightening. You don't have to go far to find someone affected by the disease. No one who's seen it happen wants to live through it.”

Toomey, his wife, Kris, and their three children were among 20,000 people to participate in the “Walk to End Alzheimer's” in November in Philadelphia, one of 30 walks held across the state as part of National Alzheimer's Awareness Month.

“Some were caregivers, some were victims of the disease themselves, some were volunteers,” Toomey said. “It was a great show of unity, compassion and energy.

“I realized I need to do more in my role to help find a cure for this disease.”

U.S. Sen. Jay Rockefeller, D-W.Va., said a bipartisan approach is necessary to find a cure.

“Alzheimer's is a plague of extraordinary power that destroys not just bodies, but minds,” said the retiring senator, who founded the Blanchette Rockefeller Neurosciences Institute at West Virginia University. “This is a deeply personal fight; I lost my mother to this dreadful disease. Her struggle and our family's loss made me an activist, determined to do something so others would not have to endure the same suffering.

“The goal at BRNI is to eventually eradicate this disease. But we also must support those struggling today, which is a goal of the task force and one that I strongly support.”

In mid-January, Congress unanimously passed the bipartisan National Alzheimer's Project Act, which allocated a record $122 million increase for research, education, outreach and caregiver support through the first National Plan to Address Alzheimer's Disease.

Though no cure exists, early detection is critical because doctors can use medications and treatments to slow the disease, Jacobs said. Plus, early detection allows patients to have a say in their treatment before it's too late, he said.

“They know their loved ones are going to have (to) see them decline, and early detection gives them some input,” he said.

Salena Zito and Chris Togneri are Trib Total Media staff writers.

 

 
 


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