May 2017 Volunteers of the Month
John and Loretta Russo

When John Russo was diagnosed with ALS in May of 2013 at the age of 57, he had reason to feel hopeful. After a 30 - year career in healthcare, he knew that medical research was very active and he believed that there must be promising treatments just on the horizon.

John was surprised to see that a cure was not just around the corner. Instead of sitting back and being disappointed, John and his wife Loretta decided to act. He wanted people in power to know that ALS was a  serious disease that was was seriously underfunded.

The next spring, John made his first journey to Washington, DC for The ALS Association’s  Advocacy Days. Everything was new to him.. He met the Chapter staff and board members and jumped right into the advocacy effort. John had already met many people with ALS from his area in New Jersey. From his first visit to Washington, to his efforts today, John insists that he isn’t fighting for himself alone. He’s advocating for all of those people he has met along the way.

A number of things struck John while visiting the nation’s capital in 2014, but one that stood out was how many people had called him “a hero.” “A hero? Me?” he said. “No, I’m not here to be called a hero or brave, I’m here because I have to be, for myself and for thousands of others. Don’t call me a hero, call me John.”

John would not allow ALS to define him nor would his wife Loretta. They continue to live their lives as normally as possible. They have friends over to watch sports, go out to dinner, and enjoy life as a married couple. They refuse to be “the couple that’s dealing with ALS.” Instead, they are John and Loretta, the same people as they were in April of 2013 as they were after his diagnosis in May 2013.

However, that normalcy is what drives John to advocate for others. At his ALS Association New Jersey ALS resource group meeting, he met people like Milt Sierra, whose ALS progressed faster than John’s.. Milt had taken his story to Trenton lawmakers for the Chapter’s state advocacy efforts and John said “If Milt can do it, so can I.”

Since then, John has attended advocacy days in Washington, DC every year and he has visited Trenton many times to lobby for funding ALS care services. He has testified to the Assembly Budget Committee about the need tfor this funding and has also recruited others to be advocates.

“My goal is to meet with politicians to share my ALS story, request support and funding, and promote awareness of the initiatives important to ALS patients and families,” said John. “It is vital when funding research to consider the patient point of view, which is why I also signed up to be a consumer reviewer in peer review panels for government funded research.”

In addition to his role as a consumer reviewer, John is a regular contributor to the ALS Registry. Here he fills out surveys to help collect data in the hope that thorough analysis researchers will find commonalities to uncover some of the causes of ALS. At support groups and events, John tells others the purpose of the Registry and encourages them to get involved.

Like so many others with ALS, John was uplifted by the Ice Bucket Challenge. He and Loretta hosted an Ice Bucket Challenge fundraiser and used the event as a way to raise more awareness in their  Brulington County, NJ community. They sought out more ways to help beyond advocacy and Loretta used her background as a physical therapist to conduct an in-service on stretching techniques for caregivers to benefit people with ALS. She felt positively about helping others and hopes to do more again.

In meeting after meeting, John never lets ALS define him, even as he advocates for a cure. Legislators listen and identify with him on a personal level before addressing ALS as a disease. That’s how he wants it to be, for himself, and for others.

This May, John and Loretta will again go to Advocacy Days in Washington, DC.. They will also go to Trenton to advocate again. They’ll speak up for people they have met like Milt and others who can no longer speak for themselves. But they won’t be heroes. They’ll be John and Loretta, friends to everyone who comes to know them, allies for the ALS cause, and some of the most reliable and thoughtful volunteers that the Greater Philadelphia Chapter counts on all year round.


 
 

The ALS Association Greater Philadelphia Chapter
321 Norristown Road - Suite 260, Ambler, PA 19002
215-643-5434

The ALS Association is a 501(c)3 nonprofit organization and donations are tax deductible to the full extent of the law.