Today’s post is authored by Joan Sucher, who was diagnosed with ALS in early 2013. Joan and her husband, Tom – married for 46 years — have three children, Craig, Kate and Kristen, and seven grandchildren ranging in age from 14 1/2 months to 16 years. Joan insists that despite ALS, her life is “full, rich and blessed.”
By Stan Goldberg
This week’s blog post was originally published on thecaregiverspace.org.
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.
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 […]
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.
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.
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: