After 25 years I’m Still Fighting Against ALS

By Maureen Barber Hill, President/CEO of The ALS Association St. Louis Regional Chapter

Although I think of my dad often, Father’s Day always brings with it a special pang of sadness.  It’s been 25 years now that I have not been able to spend Father’s Day with him  —  he lost his battle to ALS in September of 1992.  As the years pass I think I will always feel like a part of me will always ache – like I’m missing something, but more so someone, especially around those pivotal moments of my life and my children’s lives.  My kids never got the opportunity to know what a great man he was.  My daughter Meghan was only four years old and my son Michael was just seven days old when ALS took their grandfather from them.

Dad-e
Dad with my daughter Meghan

 

Over the past 25 years he has been missed tremendously, but I think he would be proud of the fact that my family continues to carry on his legacy, fighting against the disease that took his life, working to increase awareness and raise funds for ALS care and research.  My mom, rest her soul, made sure of that!  She and Dad really enjoyed playing golf and so our family started “The Wayne Barber Memorial Golf Tournament” as a tribute to my father and so that we could give back to the ALS Association.   This event was our revenge on ALS!  We knew firsthand  that this disease was a relentless monster and we wanted to do what we could to help and support others going through an ALS journey and help find a cure.

Family photo -e
The Wayne Barber Family

My family organized and ran the tournament for ten years, but eventually we came to the conclusion that the event needed to grow – so that it not only memorialized Dad, but celebrated the lives of other people with ALS and their families.   In 2005, we handed the event over to The ALS Association St. Louis Regional Chapter, who adopted it as one of their primary fundraisers, renaming it The ALS Association Annual Memorial Golf Tournament.

Twenty three years later the fight against this disease continues, but with a growing sense of hope.  Just last year, the first new treatment for ALS in two decades, Radicava, was approved by the FDA, and five new genes responsible for contributing to the disease have been identified since 2014.  Because of these advances, the decision was made to rename the golf tournament, “Swing for a Cure” to emphasize our organization’s commitment to ending this disease once and for all. My family remains very involved in this event  — held every August  – which has raised over $1.5 million dollars since its inception.

So with another Father’s Day approaching I ask myself the same questions I have asked for 25 years.  How do I honor my dad?  The answer may change as I grow older, but one thing I know for certain is that I, along with my three brothers, their wives, our children and great family and friends, will continue our commitment to fight ALS until there is a cure.  Until then, you will find me — and my family — at the Swing for a Cure Golf tournament, where I know we all feel closest to my dad and where we can celebrate his legacy.

Ladies foursome2

I will be on the course swinging my club for a cure because I know firsthand that watching someone you love fight a terminal disease is one of the hardest things you can go through in life.  It saddens me to know that hundreds in our region will receive an ALS diagnosis this year, and that their loved ones will face the heartbreaking task of saying goodbye all too soon. My dad was a hero in my eyes – he fought ALS with incredible strength and courage.  And my mom was certainly a hero as well — as his primary caregiver she often neglected her own needs to ensure that Dad was well cared for.

Despite knowing that there was no cure for ALS, I was still not prepared to lose my dad at the age of 35. As I grow older no matter whose love gives me happiness I will always by my daddy’s little girl.  I miss you so much Dad.

Swing for a Cure, The ALS Association St. Louis Regional Chapter’s annual golf tournament, will be held on Monday, August 20th, at Sunset Country Club in Sunset Hills, Missouri.  For more information or to register your foursome, click this link.

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