The Walk to Defeat ALS® is a colorful event. Team t-shirts
from nearly every color of the rainbow dot the landscape, along with hats,
shoes, signs. Color is everywhere.
But returning this year along the route, there will be an additional pop of color—a pop of color with a purpose. In 2018 The ALS Association launched Unlock ALS at Walk events to provide participants with a tangible way to recognize the real reasons they Walk to Defeat ALS. At the walks, participants select a lanyard in one of four colors to represent their connection to ALS. These colors represent:
Continue reading Unlocking ALS—One Step at a Time
- Yellow: I have ALS
- Blue: I Walk in Honor of Someone with ALS
- White: I’ve Lost Someone to ALS
- Red: I Support the Cause and Want to Defeat ALS
The role we can play as individuals in finding new
treatments—and a cure—for ALS can seem small. Most of us aren’t world class
medical researchers. Most of us don’t have hundreds of thousands of dollars to
donate to funding those doing that research. Our role in fighting ALS seems
minor by comparison, but it isn’t. By adding our voices to the chorus of voices
advocating for people with ALS we can—and do—play an important part of the
fight for a cure.
As we continue with ALS Awareness Month, we wanted to look
at ALS advocacy and explore what is being done, what can be accomplished, and
what you can do.
Continue reading You Are Part of Finding a Cure for ALS—By Being an Advocate
For the general public, ALS might bring some specific images
to mind. Many might think of grainy black and white newsreel footage of Lou
Gehrig standing in Yankee Stadium. Others might picture the same scene but
replace the actual Gehrig with Gary Cooper from the movie Pride of the Yankees. Still others might picture—and hear—Stephen
Hawking and his computer-generated voice. More recently, Steve Gleason has
become what many think of when they think “this is what ALS looks like.”
But for those living with ALS and those caring for them, the
disease isn’t embodied by a famous person, present or past. ALS looks like a
kitchen reconfigured to allow for a power wheelchair at the table. It sounds
like a ventilator or the hum of other medical devices. It feels like grips on
silverware or textured plastic cups.
As we begin May and ALS Awareness Month, we want to explore
what ALS looks, feels and sounds like for those with ALS and their families. As
these families know, the progression of the disease means near constant change—some
that can be planned for, and some that can’t.
Continue reading This is What ALS Looks Like
As the days grow longer and warmer, we in the Midwest turn out thoughts to summer. And with summer comes the ALS Association St. Louis Regional Chapter Walks to Defeat ALS®. The Springfield, Illinois, Walk is June 15 in in Southwind Park. The St. Louis Walk is June 22 in Forest Park.
These walks would be not be possible without the work of the
Walk Committees. Committee members are involved as participants and behind the
scenes, playing an integral role in the success of the events. The committees
assist in booking vendors, securing in-kind donations, supporting team
captains, recruiting volunteers and assisting with the planning of the events.
Continue reading Walking Together: Walk to Defeat ALS Committee Members Walk for Many Reasons
Anna Zelinske, M.A., CRC, CCM joined our staff in the role of Director of Programs and Services for Patient Care last month. Anna has 19 years of experience in the disability field, with a Bachelor’s Degree in Psychology and a minor in Human Service Agency Management from Missouri Valley College, and a Master’s Degree in Rehabilitation Counseling from Maryville University. She has a niche for developing and overseeing quality programs with a solid understanding of addressing the needs in the community and working with a team to making a positive impact for those served. In today’s post, Anna shares her story of how she got her start in the disability field and her work at the Chapter so far.
Continue reading Reflections from our Director of Programs and Services for Patient Care
The questions in this post are answered by by Jessica Chapman, the National Director of Planned Giving with The ALS Association. She oversees the planned giving department and focuses on donor relations and marketing. Having worked in gift planning since 2009, Jessica enjoys connecting donors and their advisors with gift options that best meet their needs.
Continue reading What You Should Know About Planned Giving
Ken Danridge was just 56 years old when he was diagnosed with ALS. Married for 13 years to his wife Amy, Ken is the father of three young children – Blake, Maya and Addison. Ken also served in the U.S. Air force for nearly 20 years and was stationed in Oklahoma City during the terrorist bombing in 1995. With the muscles in his body progressively weakening, Ken now uses a motorized wheelchair to get around, a feeding tube to eat, and a ventilator to breathe. Despite the many limitations ALS has imposed on his once active lifestyle, Ken remains a beacon of positivity, intent on using his diagnosis to connect with others with the disease and influence and motivate the people around him. Below, Ken shares his philosophy on living with ALS.
Greetings, my name is Ken and I have ALS. I was officially diagnosed in March of 2017, but I had symptoms for about two years prior to the confirmation. I didn’t really think much about the periodic loss of fine motor skills in my left hand, but when I developed a dropped left foot I became concerned.
Continue reading Living With ALS: Ken Danridge