Fighting in Memory of Grandma Ann

By Molly Cruitt

Earlier this summer, I got married at the church I grew up in, three days after my grandmother’s 78th birthday. My grandmother wasn’t there.

It’s been almost a full decade since my grandma lost her battle with ALS plus dementia, and it’s easy to get lost thinking of all the things she’s missed and the moments that will continue to happen without her present.

Continue reading Fighting in Memory of Grandma Ann

Josh Rogers: Why I Walk to Defeat ALS

By Josh Rogers, Senior Vice President & Partner, FleishmanHillard

A few weekends ago, I was jogging past Steinberg Rink in Forest Park and I remembered the first Walk to Defeat ALS® that I attended. The Walk started and finished at Steinberg. That was 2005 or 2006, I think.  I participated in two Walks at Steinberg. Then the event shifted to the Forest Park Visitor’s Center. And this year, we’re moving again to the upper Muny parking lot.

Each location to date has served us very well as the event has grown. And I know our new spot will be great too. Forest Park is such a wonderful institution … it’s impossible to go wrong with an event in the park.

Continue reading Josh Rogers: Why I Walk to Defeat ALS

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.

Continue reading After 25 years I’m Still Fighting Against ALS

The Rudin Family Keeps on Truckin’ at the Walk to Defeat ALS®

When you attend a Walk to Defeat ALS®, you’ll be surrounded by hundreds of people who have been touched by this disease, each with their own story of how ALS has impacted their lives. Some are still fighting, and complete the route in their wheelchairs, next to an army of supporters cheering them on.  Some have lost someone special to the disease, but are committed to continuing the fight in memory of their friend or loved one.  All are warriors in the fight to defeat ALS.

Chatham, Illinois resident Ben Rudin was just 40 years old and the father of two young sons when he was diagnosed with ALS. He and his wife, Rebecca, participated in the Springfield Walk to Defeat ALS®, forming a team of family and friends to walk in support of a cure and to fund care for people living with the disease. An avid music lover and fan of the musical group, the Drive By Truckers, the family named their team, Truckin’ with Ben. 

Continue reading The Rudin Family Keeps on Truckin’ at the Walk to Defeat ALS®

Get Involved in the Fight Against ALS

May is ALS Awareness Month, a great time to get involved in the fight against ALS.  In an earlier blog post, we told you a little about how you can be a voice for families living with an ALS diagnosis by becoming an ALS Advocate.  This week, we want to introduce you to some other ways you can have some fun and make a difference!

Continue reading Get Involved in the Fight Against ALS

ALS Advocates Will Make Their Voices Heard

Tomorrow, more than five hundred advocates will gather on Capitol Hill in Washington, D.C. for National ALS Advocacy Day.  ALS advocates from all around the country will meet with members of Congress to share their stories and educate legislators about the importance of continued funding for ALS research and patient care.

Through the efforts of ALS Advocates,  more than $1 billion in federal funding has been generated for ALS-specific research since 1998. In fact, ALS Advocacy efforts have been responsible for many legislative victories, including securing veterans benefits, enacting the ALS Registry Act, appropriating funding for caregiver relief and the ALS Research Program at the Dept. of Defense, and passing the Medicare waiver.

Continue reading ALS Advocates Will Make Their Voices Heard

May is ALS Awareness Month

May is ALS Awareness Month, an opportunity to focus the public spotlight on ALS and gather support for people currently fighting the disease, as well as the search for treatments and a cure. Many people don’t fully understand the impact an ALS diagnosis has on a family, so May is the perfect time to get people talking about what ALS is and what’s necessary to end it once and for all.  Here are a few ways you can raise awareness in your community:

Continue reading May is ALS Awareness Month