One way people can fight Alzheimer’s: Speak Up
By Julia Brinjac Miller
For the Observer-Reporter
With its series, “No Longer Me,” the Observer-Reporter shined a spotlight throughout 2014 on the realities of Alzheimer’s disease, dementia, and the dramatic impact it has on families and caregivers in Western Pennsylvania. The series allowed readers a glimpse into the very real struggles that face over 5 million fellow Americans afflicted with this devastating disease. Five million, a number that is set to skyrocket to 16 million by 2050 and comes with a truly staggering pricetag, in both monetary and human costs.
Alzheimer’s is the sixth-leading killer in the United States. It disproportionately affects women, who both suffer a higher incidence rate and shoulder more than 60 percent of the caregiver burden. Women, like the mother of Washington native David Lusk, who was diagnosed in 2008 and died in October 2013.
“What struck me most about this disease was the rapid decline my mother experienced in 2013. To see my father, after 58 years of marriage, helplessly watch her slip away in what felt like an instant was completely devastating,” Lusk said.
The Alzheimer’s Association of Greater Pennsylvania is on the forefront of battling this disease here in the commonwealth. Through multiple “Walks to End Alzheimer’s,” The Greater Pennsylvania Chapter united more than 13,000 participants, 1,200 teams and 1,000 volunteers to support Pennsylvania’s estimated 400,000 people suffering from dementia and the 130,000 receiving direct services from the chapter. These numbers are truly tremendous, yet when a state representative was asked at a 2014 Walk what could be done to affect more change, the response was surprising: “Speak up.” We discovered that not a single letter was sent or phone call made about the cause to this representative’s office during the weeks following, despite hundreds of constituents participating in their local Walk to End Alzheimer’s. For the sake of those suffering from Alzheimer’s, both patients and caregivers, this must change.
Nobody knows this better than David, who joined the Alzheimer’s Association as the associate director of Advocacy and directs the Association’s Ambassador Program:
“I joined the Alzheimer’s Association to help my mother battle this horrible disease,” David said. “My goal was to bring my expertise to the fight on the Hill in Washington, D.C. This year the Alzheimer’s Accountability Act was incorporated into the omnibus funding bill and includes a $25 million increase for Alzheimer’s research. However, scientists have stated that accomplishing the goals of the National Alzheimer’s Plan will require a commitment of at least $2 billion a year. There’s still more to do.”
If awareness is the foundation of change, advocacy must be the building blocks. The Observer-Reporter was fundamental in bringing awareness of Alzheimer’s to the commonwealth and we cannot thank them enough. However, it is now our turn to make sure our elected officials, both state and federal, know how important defeating this disease is to their constituents. We must collectively raise our voices for those who have been robbed of theirs by this disease.
Join the Alzheimer’s Association of Greater Pennsylvania as an advocate to support our cause by visiting www.alz.org/advocate on the Worldwide Web, We also ask that you write your state and federal legislators and let them know that you want them to stand up and fight Alzheimer’s disease. This disease must be a priority for Congress and state legislatures who will be critical partners in helping secure the research funding needed to find a cure. For help finding your state representatives, please visit www.legis.state.pa.us/cfdocs/legis/home/findyourlegislator.
Federal Legislators can be found at online at www.alz.org/advocate.
Advocate for our stories, our momentum, our cure.
Julia Brinjac Miller is public policy coordinator for the Alzheimer’s Association Pennsylvania Public Policy Coalition.