With the 2020 election looming, it seems every other ad highlights a different elected official in either a positive or negative light. But when we look beyond the talking points that dominate our screens, we often find that elected officials at the federal, state, and local level are not only open to, but eager to hear the thoughts of the constituents they are elected by. By becoming an ALS advocate today, you can make your thoughts known to your elected leaders and advocate for changes in laws and regulations that affect thousands of people living with ALS and their families.Continue reading Bringing About Real Change Step-by-Step: What it Means to Be an ALS Advocate
Though the hardships of ALS can create mental health challenges and isolation, it may help to find support and strength from people who are going through or have gone through similar experiences. During this COVID-19 pandemic, maintaining a real-time connection with others has become all the more critical for our emotional health, and a support group provides an opportunity for people to share personal experiences and feelings, coping strategies, and firsthand information.
Begun in July of this year, our Chapter’s Virtual Support Group exists to help keep people with ALS and ALS caregivers connected emotionally in a time where we are not able to meet in person. Through this virtual community, we hope to help everyone feel closer.Continue reading Not in This Alone—New Virtual Support Group Offers Sense of Community
The ALS Association funds millions of dollars in research every year, in a variety of scientific focus areas critical to advancing the search for treatments and a cure for ALS. In the nearly 150 years since ALS was first described in 1874, the search for new treatments and a cure has been frustratingly slow. However, the last decade has seen promising acceleration in progress, and in the last few years, five genes related to ALS have been identified. The ALS Association is currently funding a total of 169 active research projects in 16 different focus areas, and for everyone involved, critical discoveries cannot come soon enough. The promise shown in ongoing biomarker research gives reason for hope.Continue reading ALS Biomarker Research — One More Reason to Hope
When Scott Lato was diagnosed with ALS on March 29 of last year, it wasn’t long before he and his family realized that certain aspects of their home had become very limiting to him—and provided additional challenges for his caregivers—as his ALS symptoms continued to progress. However, with three boys at home aged 9, 11, and 18, he and his wife Bernadette, both in their 40s, didn’t have the financial ability to suddenly transform their house.
For many families living with ALS, this situation is all too familiar. ALS does not only devastate an individual physically, it can quickly overwhelm a family financially. But would the Latos really have to choose between financial stability for their family and Scott’s ability to access basic needs in his own home?
Thanks to Jane’s Angel Fund, they did not.Continue reading Compassion Will See Us Through—Jane’s Angel Fund Provides Financial Relief to ALS Families in Need
It seems like it was long ago, but in reality it’s only been a couple of months or so since things were “normal” for most of us. Schools were in session, most of us were actually “going” to work in person, and we were all waiting for spring to arrive.
And then everything got turned upside down. Event after event was either canceled, or postponed, or changed in some way to ensure the safety of all. We’ve all done what we needed to do.
And just like that much that was to be in-person became virtual, including the annual Jim Schoemehl 5K Run, being held this Saturday. The run will still be held—and you can still participate—but it will all be held virtually.Continue reading A Virtual Story for a Virtual Run—How We Can Still Connect When We Are Apart
In the last year, nearly 450 volunteers lent a helping hand to our Chapter in some way, shape or form. Some gave a few hours of their time, some dozens upon dozens of hours. Some came to us after having had a family member or friend served by our Chapter in the past; others came to us simply out of a desire to make a difference. These volunteers are young and old, from all over our region, and from all sorts of different backgrounds. Each is unique, and each has a story.
April is National Volunteer Month—a month when we recognize the contributions volunteers make when donating their time, talents, and energy to worthy causes. The ALS Association St. Louis Regional Chapter depends on the efforts of our volunteers to help support our many programs, and we are incredibly grateful for all that our volunteers do for our ALS community.
In honor of National Volunteer Month, we are sharing the stories of three chapter volunteers to shine a spotlight on their contributions in the fight against ALS.Continue reading Not In This Alone—A Spotlight on Our Volunteers and Their Stories
By Gregg Ratliff
Shortly after Nancy’s diagnosis of “Lou Gehrig’s Disease” I read on the ALSA website that “ALS is not just the patients disease, it is a family’s disease.” My care-giving perspective has allowed me to truly understand and validate this statement. Our family’s life changed dramatically over the seven years of Nancy’s illness. It strengthened some things, like our love, our resolve, our faith and our attitude control toward things we faced in life. I personally spend less time worrying and focusing on things I had no control over (which are most things in life). This provided me more time to focus on important and often overlooked things around me. My perspective changed tremendously. Joyce Meyer once said, “Your problem is not your problem. Your problem is your attitude toward your problem.” Marcus Aurelius said it this way, “Our life is what our thoughts make it.” So, anytime I began feeling sorry for myself I simply looked at my wife lying in the bed and said … “Gregg, you have no right to feel sorry for yourself. Be strong for her and yourself!” When I thought Nancy might be facing difficult times I would play music for her, read the Bible to her, pray for her, massage her feet and hands with lotion and remind her how much I loved and admired her.
LeBron James did it. Bill Gates did it. Oprah, Steven Spielberg and President George W. Bush did it. But the majority of people who took the ALS Ice Bucket Challenge in 2014 were not celebrities, just ordinary folks who got caught up in the fun of nominating friends and family on social media to be doused in water and ice for a good cause. It’s safe to say, however, that there was definitely another reason why the Ice Bucket Challenge gained traction. ALS is a relentless disease that takes away a person’s ability to move, walk, talk, and breathe on their own and keeps them trapped in their body. To watch someone you know go through this is absolutely devastating, and knowing that there is no cure can sometimes make people feel both helpless and hopeless. For the thousands of individuals affected by ALS, this painful reality was fuel for action that inspired a community of people to come together four years ago to create the original ALS Ice Bucket Challenge.
What followed from this largest viral social media movement of all time was not just news feeds packed with ice bucket challenge videos, but real and meaningful impact for people with ALS – and for researchers searching for treatments and a cure. The effects of the ALS Ice Bucket Challenge continue to be felt in the ALS community.
Our guest blogger this week is Christie Seidl, a massage therapy student from The Body Therapy Center and School of Massage in Swansea, Illinois. Christie will obtain her MBLEx certification this August, and currently has her ASCP MLT certification and an associates degree in laboratory science.
For people with ALS, muscle spasms are a common and sometimes painful occurrence. Spasms and cramps are characterized by a sudden, involuntary contraction of muscles, and are the result of the ongoing disruption of signals from the nerves to the muscles that occurs in ALS. There are four simple techniques you can use to help alleviate the pain and help stop the spasm.
Today is the first post in a series on ALS caregiving by guest blogger, Idelle Winer. Idelle will be sharing her journey as an ALS caregiver and asking you to share yours as well.
Are you the caregiver of a loved one with ALS? Just as the journey of every ALS patient is unique, so are the experiences of family members and caregivers. My name is Idelle, and I would like to share my journey, beginning with how I learned that my husband Brian had ALS.