May is ALS Awareness Month, and The ALS Association Alabama Chapter is creating awareness and understanding of this devastating disease by bringing attention to the needs of people across the state who are living with ALS. The Alabama Chapter is launching a new awareness campaign; ‘Every Moment Matters'
Clinical trials are the most reliable – and ultimately the fastest – way to translate promising laboratory science into new and better ways to treat and care for people living with ALS. Therefore, the Association is working to significantly increase the number of high-quality ALS clinical trials as part of its strategic priority of finding new treatments and cures.
The ALS Association is launching an ambitious slate of federal and state policy priorities for 2023. The priorities build upon the successes achieved and focus on augmenting our work to accelerate the search for new treatments and cures, optimize care for people living with ALS today, prevent ALS, and empower everyone with ALS and their families to live life on their own terms.
Jackie could have been the The ALS Association Greater Philadelphia Chapter's volunteer of the month years before her mother's ALS diagnosis. Ironically, in 2013, her dedication to the ALS mission took on an entirely new meaning for her.
We spoke with Kara Nett Hinkley, national vice president of state policy at The ALS Association and member of the National Association of Insurance Commissioners' Consumer Advisory Board, to discuss some of the important work being done to break down barriers to accessing health care.
In August 2015, The Association committed $3.5 million from money raised through the ALS Ice Bucket Challenge to the Genomic Translation for ALS Care (GTAC), a collaborative nationwide precision medicine initiative through Columbia University Medical Center (CUMC) and Biogen, which is being led by Dr. Matthew Harms. GTAC is actively enrolling now (scroll to the bottom for more details) with the ultimate goal of ensuring the genetic characterization of all people living with ALS.
My father, Frank Daugherty, died when I was 18. He was a gregarious and truly big-hearted man. He always looked for the positive in people and events. He was happy and he projected that spirit to all who were fortunate enough to be in his presence. He always wanted to do things with me. Playing ball in the backyard was something that we loved to do together. He'd come home from work ready to go saying, "What are we going to do; where are we going to go?" This was all the more remarkable because he was older than dads of other kids my age yet he had a seemingly boundless amount of energy.
The ALS Association Florida Chapter recaps fiscal year 2020-21 by discussing accomplishments made that drive forward our vision and some fundraising/event downfalls due to COVID-19.