ALS Advocacy: Why It’s Important and What You Can Do to Make a Difference

An important part of our mission at the ALS Association is to advocate for changes in laws and regulations that affect thousands of people living with ALS and their families. ALS advocacy has resulted in policies that not only advance the search for treatments and a cure, but has also helped to ensure that people living with ALS have access to the healthcare they need and deserve to maintain a higher quality of life.  ALS advocates from around the country have been instrumental in passing legislation that expanded veteran’s benefits, increased national data collection through the ALS Registry, and improved insurance and disability coverage for people with ALS.  More than $950 million in federal funding has been generated for ALS-specific research since 1998.

Continue reading ALS Advocacy: Why It’s Important and What You Can Do to Make a Difference

ALS – How Your Life Can Change in an Instant

Today, we are pleased to be joined by a wonderful ALS advocate Rob Robertson from Belleville, Ill. Rob proudly served our country in the U.S. Army for many years that included time in an elite fighting force “The Screaming Eagles.” He and his family faced many challenges over his lifetime, but nothing could have prepared […]

via ALS – How Your Life Can Change in an Instant — The Official Blog of The ALS Association

Four Myths about Hospice Care

Hospice can be a very scary word to hear, especially after being diagnosed with a devastating disease like ALS. For an individual with ALS, hospice has a completely different look and feel than it does with other terminal diseases. Because hospice provides an extra layer of care and support that a family affected by ALS truly needs, it’s not uncommon for a patient with ALS to be referred to a hospice program early on in the disease process.

Continue reading Four Myths about Hospice Care

Why We Walk to Defeat ALS: Team Tammy Hardy

After a six-year journey with ALS riddled with highs and lows, our beloved Tammy lost her life at the age of 39. Yep, 39. You might be thinking, “man, that’s young.” You’re right. It is. Tammy left behind a family and many friends who adored her. For the ninth year, we will once again come together as Team Tammy Hardy in the Walk to Defeat ALS. This is why.

Continue reading Why We Walk to Defeat ALS: Team Tammy Hardy

Living with ALS in Rural America

In a perfect world, everyone would have equal access to healthcare resources (let’s get real, in a perfect world, ALS doesn’t even exist).   Until that time – when we live in a world without ALS – living with ALS in a rural community can be extra challenging.    According to The National Rural Health Association here are just a few reasons why:

Continue reading Living with ALS in Rural America

In It For Life

By Dave Van de Riet

As summertime is upon us, communities all over the country will begin to host the Walk to Defeat ALS.  This annual event brings together thousands of people nationwide to walk in honor of or in memory of someone they love.  But that doesn’t tell the full story as to what this Walk means. Continue reading In It For Life

ALS Caregiving – Preserving Your Relationship with Your Partner

Illness, including ALS, can attack without warning and can happen to anyone. No two people with ALS are living in the same situation and no two ALS illness courses will exact the same toll. But all couples, where one partner is placed in the dual roles of loving partner and personal care provider, will experience the greatest test on a marriage and that of their commitment to it.  It is essential that couples continue to function as partners, and not become only patient and caregiver. Continue reading ALS Caregiving – Preserving Your Relationship with Your Partner

Welcome to our blog: ALS Connect

Welcome to The ALS Association St. Louis Regional Chapter’s new blog – ALS Connect.  We’re excited to provide a space to share news, updates and other content with you, while also offering an opportunity for us to learn and interact with our friends in the ALS community.

Here you’ll find stories, resources for caregivers, local event updates, research and advocacy news, as well as details on opportunities to engage with our Chapter and supporters.

We hope that you’ll find this a place where you can express your thoughts and share your perspectives. We look forward to growing with you as we embark on this new journey.  Thanks for stopping by!