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| Aimee and Kimberly |
On March 8, the Les Turner ALS Foundation honored cyclist/activist Bob Lee and
the "Aimee" of askaboutaimee.com (www.3reasons.org) with its 2008 Hope Through Caring Awards for their ALS advocacy efforts.
Following is the text of the remarks
Aimee's sister-in-law Kimberly delivered (brilliantly!) on Aimee's behalf in response to being named a 2008 Hope Through
Caring Award recipient.
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Aimee Responds
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| Jim and Aimee, Bob and Anne |
Thank you.
I am honored and humbled to be mentioned in the same class as Bob
Lee, Ralph Russo, and the other recipients of the Hope Through Caring Award.
Their stories of courage, perseverance,
and hope motivate me to redouble my efforts and to devote more time and energy to fighting this relentless disease. In accepting
this award, I promise I will strive to be worthy of mention in such lofty company.
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| Dancing with the Stars |
While
I am grateful for the Foundation’s recognition, I must share this honor with the many friends and family who have supported,
encouraged, inspired, and joined our family in our efforts to raise awareness about ALS—many of whom are here tonight.
They
have lifted my spirits when I needed a laugh. They’ve talked and listened into the wee hours of the morning. They’ve
lent me an arm when I needed support, a hand when I needed help up, and a shoulder when I’ve broken down and cried.
They’ve cut my food for me, buttoned my jeans, massaged my cramps, cleaned up my spills, and pushed me miles in my wheelchair.
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| Zacky, Christopher and Nick |
Most of all, they have given me a reason to keep living with as much vitality as I can muster and to keep fighting
with every fiber of my being. I give them my deepest thanks and love.
***** I
was diagnosed with ALS in September of 2004. In October, Jim and I attended our first Les Turner Foundation support group
and met a man who would change my life.
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| Tireless advocate, Marty Woywod |
As
I struggled to make sense of a disease that could rob three small children of their mom, I listened and learned from Marty
Woywod that one way to make sense of this disease was to spend the rest of my life trying to defeat it.
I vividly remember looking across the table at Marty as he talked about
his public role and thinking, “I could never do that.” It didn’t take long for Marty to convince me that
I had no choice but to do that.
Thank you, Marty, for your tireless efforts and
for inspiring me, my family, and so many others to join the fight.
*****
The
importance of Marty’s mission, the Les Turner ALS Foundation’s mission, and the ALS community’s mission
struck us again last week in a personal way.
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Jim and I learned that the younger brother of one of our college classmates, a devoted husband and father of two
young boys, had earlier that day been diagnosed with ALS. And just like that, another young family was set on a path they
never imagined.
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| Les Turner ALS Foundation social worker Laurie with Nick and Emily |
We shared one heartfelt piece of advice: “You must find excellent
ALS resources in your area.”
At a time when we saw little reason for hope, staff from the Les Turner Foundation and the Lois Insolia ALS Center
encouraged us to focus not on dying, but on living as richly as we could in spite of ALS.
*****
Part of “living well” for us meant doing everything in our power to educate people about ALS. We continue
to be astounded at how often we encounter misinformation about this disease that has been around for 140 years.
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| Jim and Emily |
There
was the professor who at first rejected a proposed ALS project from an occupational therapy student because ALS only strikes
the elderly; it “can’t happen” to people in their 20s or 30s.
Or the email correspondent
who suggested ALS doesn’t exist—that every case of ALS is really Lyme disease. That even Lou Gehrig himself was
afflicted with Lyme disease.
Or my all-time favorite: the lab technician who said, “I know the L stands for Lou…but what do the A
and S stand for?”
This would be funny if it weren’t so exceedingly frustrating and deadly serious.
*****
5,600
patients a year are diagnosed with ALS. Another 5,600 patients a year die.
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| Kelly and Jim Dobes |
That may not sound like many people, and compared to some other diseases, it’s not.
But it is the
equivalent of a mid-sized jet, carrying about 215 passengers and crew members, crashing every other week in the U.S.
Imagine that for a moment: a plane-load of people Every. Other. Week.
Year in and year out.
Staggering.
*****
At church one day, I watched and listened as two cancer survivors compared how long they had been cancer free.
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| Jim and Aimee, Amy and Tom |
Cancer survivor.
Cancer-free.
What will it take—how long will it take—before we can adopt such language for ALS?
ALS survivor.
ALS-free.
Do you like
the sound of that as much as I do?
*****
So how do we get there?
That question brings me back to that amazing support network I mentioned earlier.
Our family and friends are not professional lobbyists or fundraisers.
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| Matthew, Christopher, John, Rachel and Renee |
They are, however, people who have taken an intense interest in advancing
the cause of the ALS community, and they are doing everything in their power to bring attention to this disease within their
spheres of influence.
They are ALS activists.
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| Craig and Kimberly |
I know “activism”
can be a daunting word. So often, when we think of activism we imagine militant protesters marching on Washington, attending
rallies or sit-ins, or picketing for their cause.
But
our family and friends are proof that activism does not require combat boots.
There’s the softball fanatic who shared his proximity to ALS with
his team—all of whom promptly signed up to join us at the Walk4Life. The team then went international with their support,
traveling to Canada for a tournament where they raised hundreds of dollars, engaged in conversations with other teams and
their supporters, and generated enormous awareness about ALS.
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| Kelly and Dan |
There’s the mom of three young boys who organized Tag Days in our
area and, in the process, discovered how dramatic the impact of children telling people about ALS can be.
There are the family members and friends who had an idea for a Walk4Life
team name…that grew into an idea for bumper magnets…that morphed into a website…that has led to greater
reach than any of us had imagined.
We encourage all of you to continue to share your interest in ALS as broadly as you can.
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| Scrapbooking pals Amy, Aimee, and Lisa |
Every one of you has a story to tell. Something, or someone,
brought you here tonight.
Tell those stories far and wide. Convey the urgency of our cause. Explain that ALS can strike anyone, at anytime.
Together, we will introduce two new terms to the ALS lexicon:
“ALS survivor” and “ALS-free.”
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