November 2017 Volunteer of the Month

Gerry Voit

Volunteers usually contact a non-profit to see how they can help. In the case of Gerry and Kathryn Voit, The ALS Association Greater Philadelphia Chapter called them. Today, Gerry Voit continues to be an important part of the Chapter’s mission, growth, and identity by giving of himself to support ALS families.

Gerry’s wife Kathryn was diagnosed with ALS in 1998. They did not know about ALS prior to then, but, as Gerry put it, “We knew it was something we did hear.” Kathryn had been dealing with symptoms for some time, mostly with trouble exercising. The symptoms became more noticeable when Kathryn, a professor of mathematics, travelled to Singapore to present at a math conference and had trouble crossing the street. When they flew back home, Kathryn told Gerry that she couldn’t walk and she needed help getting off of the plane. That is when they were sure the symptoms were very serious.

Nearly 20 years after that diagnosis, Gerry still remembers how scared he was, but he also is reminded of his wife’s tenacity and of the many people who loved her. Kathryn had been a math professor and when they went for testing to find out what was causing her symptoms, a former student who was now a tech would shout “Dr. Voit! Dr. Voit!” Gerry still smiles knowing that Kathryn had that kind of impact on people who wanted to support her fight. Knowing that people remembered Kathryn for who she was as a person, and not only the impact of her disease continues to inspire Gerry to treat others with ALS the same way.

The Voits have always valued being prepared. Every time they saw a doctor or noticed a new symptom, they’d talk about how to prepare for what could come next. They were optimistic about the future even in the face of a terrible disease.  Prior to Kathryn’s diagnosis, Gerry had already prepared for a rewarding and exciting life together by taking an early retirement. He planned to travel with her on her speaking trips around the world. Now he was preparing to be a full-time caregiver, “And, I wouldn’t give that up for anything in the world,” Gerry remarked.

All of that preparation work and optimism came to a tipping point in the year 2000 when Gerry and Kathryn watched a PBS series with Bill Moyer on death and dying. Dan Gottlieb, a radio host, had a companion radio show on which the Voits were interviewed live and talked about their own experience and expectations about living and dying with ALS. Ellyn Phillips and others at the Chapter heard about their story on that radio show and reached out to Gerry and Kathryn to use their story to help others.

Kathryn and Gerry were happy to help. They knew that not many people were comfortable sharing their experiences with living with ALS and they hoped that they could put people at ease and influence others to support the ALS cause. In addition to volunteering, they were also asked to join the Chapter’s Board of Directors, where they remained active for over a decade.
Initially, the power of their story was felt through their advocacy efforts.  Gerry and Kathryn visited state legislators in Harrisburg, PA and on Capitol Hill in Washington, DC to make the case for funding ALS research and patient care programs. They were early supporters of the ALS Registry and gathered many supporters from Senators and Representatives.

“One of the things we latched onto early was the statistical prevalence of ALS among veterans,” recalled Gerry. “Once people determined this link, we were able to advocate for The ALS Association to receive ALS research funding through the Department of Defense and help veteran families receive presumptive disability. We became acutely aware of the veteran’s issue during our Chapter support groups. I laughed because I’m the one who is a Navy veteran, but Kathryn is the one with ALS, and together we provided support for those who needed it the most.

Gerry and Kathryn were featured in The ALS Association’s advocacy efforts. This prominence brought new friends. A photo of Kathryn in our national ALS organizations office focused on her advocacy work and the Voite appeared in many promotional materials to encourage others to be advocates. Gerry met people like Ray and Wes Rose through state advocacy days and continued to work with Ray as a Community Ambassador at various Chapter events.

Gerry and Kathryn co-chaired the first Greater Philadelphia Walk to Defeat ALS in 2002. He and Kathryn had never participated in a walk and Gerry was skeptical about whether he could be of use. Just like their advocacy involvement, the Voits were asked to help with the walk because they could educate others about the realities of ALS. Gerry did all he could to promote the walk, organize volunteers and materials, raise money, and represent the walk at local events.

It rained steadily during that  first walk in 2002. Gerry feared it would dampen spirits, but the nearly 800 people who attended insisted on walking through the rain. He saw in others the same tenacity to fight ALS that he saw every day in his wife. That first walk was just another motivator for him and one that continues to inspire Gerry today as he continues to help with the walk.

As much as Gerry and Kathryn loved advocacy and fundraising with the walk, education was where they felt the greatest rewards. Kathryn had spent her life as a teacher and ALS could never take that from her. They worked with their BAYADA Home Health Care aides on the special needs of ALS and developed close relationships with the home care workers and the leadership at BAYADA. After Kathryn passed away in March of 2012, BAYADA reached out to Gerry to continue to build bridges with ALS families. He recalled taking a photo of Kathryn to the family of one young woman living with ALS and building a connection with her so that she could feel comfortable asking for help and getting the care that she needed.

Gerry educated those living with ALS as well as their caregivers about the value of mindfulness. “I still use mindfulness techniques today,” said Gerry. “That is what actually got us talking with Dan Gottlieb way back at the start of our journey. My daughter’s husband taught Dan about Mindfulness and said ‘you need to talk to these people.’ I was thrilled when I learned that Dr. Zachary Simmons was using Mindfulness at Hershey Medical Center to help other people with ALS and their caregivers.”

That mindfulness training helped keep Gerry positive and continues to help him remain positive as he looks back at his many years as a caregiver for his wife. He is realistic about the effects of ALS, but he is also grateful for every moment with Kathryn, ALS families, and the Chapter board in particular.

“Several months before Kathryn died, we advised the Board that Kathryn planned to resign from her position because she could not communicate anymore,” said Gerry. “Ben Ohrenstein stood up and said ‘We’re going to take a vote on that issue.’ It was a unanimous vote - Kathryn was rejected from stepping down from the board. We got so much love from the Chapter board and staff and I hope to keep paying it back however I can.”

Kathryn Voit passed away in March of 2012, right before the Chapter’s Hot Chocolate event. Gerry felt that the best way to honor his wife was to continue to use their story to benefit others. Instead of stepping away from the Walk to Defeat ALS committee, Gerry continued to help organize and fundraise. He shared their story with new lawmakers. He also used his perspective to help BAYADA provide care to people with ALS just as they had done for him.

Today, Gerry Voit has rotated off of the Chapter board, but he has not stepped away from the Chapter in the least. He is an instrumental part of the Chapter’s mission and brings his optimism and compassion to every endeavor he touches. ALS is hard on everyone, from patients to caregivers to friends, and Gerry knows that all too well. As a valued volunteer with The ALS Association, Gerry Voit is contributing all that  can to make those days less challenging for all ALS families, carrying Kathryn’s light with him in all that he does.


 
 

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.