ALS Ice Bucket Challenge Progress

 

May Volunteer of the Month

Joanne Kramlik

 
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Joanne is a caring and devoted Visiting Volunteer for Peg

Peg Heid looked forward to Joanne Kramlik’s weekly visits to the cozy home she shares with her sister Martha. Joanne, a Chapter Visiting Volunteer, would stop and chat after work or over the weekend and they would reminisce about their lives, the latest news, or family.

 

For Peg, who is living with ALS and is bedridden, Joanne’s visits were her “window” to the outside world. Peg and Martha relished the time spent with Joanne, especially when a special guest accompanied her: Joanne’s 18-month-old grandson Mason who last brought his sunshine into Peg’s life in February.

 

And then, the world changed.

 

By mid-March, COVID-19 had wreaked havoc on our nation and stay-at-home orders were issued for county after county. Communication with friends, family, and loved ones began to take a bit of a turn for many of our ALS families. Joanne had to get creative! She loved “giving back” and visiting Peg. Joanne began her role as a Visiting Volunteer in 2012, took a break, and has been thrilled to be working with Peg for over a year. The companionship she and Peg shared needed to continue.

 

And that’s how she came up with “Window Talking.” 

 

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Now she and Peg communicate through Peg’s bedroom window! The window is not an obstacle, rather it is a means of connecting in a slightly different way – and it is fun! Joanne cannot wait for Peg to hear Mason speak, or to sit with her again, but until then, “Window Talking” has brought great joy to their lives during this time of social distancing.

 

Joanne’s positivity and strong faith have carried her through the worst of times. In 2001, the young mother of two lost her beloved husband Gary, her high school sweetheart, to ALS when he was only 39. It was a quick and relentless four-month battle. She had a full-time job, two teenagers whose relationships with their father were just beginning to blossom, and Gary’s health went downhill so quickly that the family did not have the time to prepare.

 

Joanne will never forget the help she received from The ALS Association Greater Philadelphia Chapter during this horrific period. “The Clinic was a godsend. The social worker never gave up with insurance issues and trying to get homecare lined up. Everyone was amazing and helpful. They were our angels. The organization had so much to offer, but because Gary went downhill so quickly, we could not take advantage of many programs,” remarks Joanne.

 

The Kramliks made the best of every day. Gary interacted with humor. There were tears of despair and tears of love. Their church, family, and great friends pulled them through each circumstance. Joanne cherishes her role as a Visiting Volunteer. “I went through it. I know what Martha, Peg’s sister, goes through. And I have compassion to sit and listen to Peg and Martha’s needs. Everyone has a voice and they all need to be heard.”

 

Joanne continues, “I believe our experience with ALS gave our family the ability to look at life situations differently. Life can be too short. Make the best of every day. Yes, there are a lot of hard days, but you have no choice but to deal with it. That’s where the Chapter comes in – they helped us deal with it. So much love and compassion were expressed to us through The ALS Association’s staff and now I want to return that to others.”

 

“You know, you just keep going as long as you can. Perseverance,” says Joanne.

 

Joanne Kramlik is living testimony of what perseverance looks like in practice. Thank you for continuing to volunteer, especially now during these challenging times.

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