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
On March 13 and 14, ALS advocates went to Capitol Hill to speak with representatives about legislation and policies intended to improve the lives of people with ALS. ALS advocates Mark Calmes and Tara Klucker had preliminary meetings with key legislators that are pertinent to our legislative priorities.
Continue reading Making Your Voice Heard on Capitol Hill
A community partner event is a fundraising activity that is organized and managed by a family, group or individual who is acting independent of The ALS Association St. Louis Regional Chapter. This August, five community partner events took place across eastern Missouri and central and southern Illinois, ranging from a tractor pull, an awareness walk before a baseball game, and two different golf tournaments. There was even an ALS Ice Bucket Challenge event earlier this month, four years after the original Ice Bucket Challenge swept social media and national headlines. This August, and every August until we find a cure, reminds us that great things happen when we come together. With all of the extra events throughout the region it was even more exceptional.
Each event has a huge impact on the community and helps people with ALS and their families in several ways. Here are five reasons community partner events are a great way to get involved in the fight against ALS.
Continue reading Communities Join Together to Support People with ALS and Fight for a Cure
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
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