Diana Kirk: Why She Fights for the ALS Community

Diana and her dad

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Diana Kirk’s life had been filled with joy. The youngest of five, she learned the ropes from her older siblings. Her mom, Maryanne, was the ultimate loving, caring and understanding mother. But it was her dad Roger who stole her heart. And when he was diagnosed with ALS, she followed her heart.

By Diana Kirk

After my dad was diagnosed, there was no hesitation that our family was going to fight alongside him. So that meant it was time to volunteer with The ALS Association. We all knew right then and there that our volunteer work wasn’t going to save our father, but it was going to help others not feel the devastation we were feeling at the time of his diagnosis.

Personally, I fundraise for the young kid who must hear their parent has an incurable disease. I was a 21-year-old junior at the University of Scranton when my dad was diagnosed. Being away at college, not with my family when we heard the news, is something that rocks your world. And when your world has been rocked, you want to do anything you can to rid the world of the disease.

My childhood years were some of the best. We were the house that every friend came to. I like to say I grew up in a gym -  going to every one of my siblings’ sports games, and then I played any sport I could when I was old enough. When I think of my dad, I think of music more than anything. Any time you were in the car with him or on a Sunday after church (if he wasn’t golfing) music would be blasting. He would quiz my siblings and me on who sang each song. I learned his favorites at an early age, and now have his weird obsession with music myself…even if neither of us is musically talented.

I am lucky enough to have the greatest mom who took care of my dad until the very end, and now continues to take care of all of us today. My oldest brother Tim, and his wife Kayla, my brother Ryan, and his wife Kaitlyn, my brother Joey, my sister Jenny, and her husband Sean. And of course, I have so much love for all my nieces and nephews!

Our family is lucky enough to have had support from so many family members – like my dad’s siblings and in-laws, Janice, Barbara, Tom, Ed, Jerry, and Kelly. And too many others to name! Everyone had a role in caring for dad.

The ALS Association has been with us from the start. The ALS Clinic put my mom and dad in touch with the Greater Philadelphia Chapter when my dad was first diagnosed in 2013 and we were able to get the necessary supplies and resources we needed. Their loaner closet supplied us with a walker and wheelchair for my dad when he needed it. They helped us get a handicapped-accessible van. If we were unsure what to do as the disease progressed, the Association was always the first step.

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Team Kirkin' It

Our family immediately started participating in the Walk to Defeat ALS®. The 2021 event was our ninth year participating, and I have been serving as team captain for the last several years. Our team, ‘Team Kirkin’ It,’ has been able to raise over $230,400 for ALS research and care services and has been the top fundraising team for three years. It truly is a group effort – my family and I fundraise together to make the biggest impact we can (thank you Facebook fundraisers!). It is my favorite day – giving back to such a good cause, hearing stories of my dad from his close friends and family, and seeing other families rally behind the ones they love.

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golf

Another big part of The ALS Association that is close to my heart is the Roger Kirk Golf Outing Hosted by Greg Gross, a former Philadelphia Phillies player. To me, this golf outing is not only a day to honor my dad, coincidentally at the Old York Road Country Club where he belonged, but also a beautiful day that shows support from friends and loved ones doing all they can to raise money for ALS. I have had the honor to give a speech at two of the dinners to remind the attendees why their participation is so meaningful to so many ALS patients and families. Since 2013, this event has raised over $475,000 My mom puts her heart and soul into this outing, along with my siblings and my dad’s siblings, as well as friends on the Old York Road board.

There is so much to miss about my dad. I miss his stories, his laugh, and the way he took over a room. I miss car rides with him and listening to his music. He passed away the year after I graduated from college. His professional life was such a big part of him, and it was something I always admired. So, when I entered the real world, I wanted to show him that I had his work ethic too. He did not get to see me in the working world too long, and I miss that I never got the opportunity to have him help me navigate this part of my life. Now that I am at the company he founded, I think of him often and am reminded of him by so many colleagues and friends. I am lucky to have my mom routing me on in everything I do, and always remembering my dad’s memory while she does.

Special thanks to Diana Kirk and the team at The ALS Association Greater Philadelphia Chapter for allowing us to share her inspiring story about her family’s journey with ALS.

To continue to follow stories about people living with ALS in the community and learn more about the disease, subscribe to receive our weekly blogs in your inbox HERE or follow us at als.org/blog. If you would like to share your story with the ALS community, contact us [email protected]

Comments

Submitted by: Nancy I. on Sat, 09/24/2022

Karen King, my pastors wife retired as a school teacher at the age of 65 in January,2022 and was diagnosed with ALS in February, 2022. They are a precious couple that has moved from NC to LA to be close to their son and grandchildren during this time of accepting this new way of living. Last week they participated in a fundraiser in New Orleans for ALS. My prayer for Karen is that God will preform a miracle and heal her. My continued prayer is that a cure will be found for ALL ALS patients.

Thank you for what you are doing! May God’s Blessings be with each of you!

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