Created by Sascha Groen and her husband, Anjo Snijders, who was diagnosed with ALS in 2017 at the age of 35, "LUKi & The Lights" follows the journey of LUKi, a charming robot who navigates life after being diagnosed with ALS.
ALS Nexus brings together the perspectives of the ALS community to connect, collaborate, and change the future of ALS. This is more than a conference – it’s an opportunity to spark new ideas and accelerate progress towards our goal of making ALS a livable disease until we can cure it.
Partnership with leading US-based ALS patient advocacy group furthers myTomorrows’ mission of ensuring that patients confronting life-threatening diseases are aware of all possible treatment options
I like to think of our life as a book with many chapters with beginnings and endings. Jim’s story begins when he was born in a small town in Pennsylvania. He had two brothers and a sister growing up under the watchful eyes of their parents. Upon graduation from high school, Jim began in the banking business. He started as a teller and worked his way up to being an auditor. He was also active in his church. Along the way, Jim made very many good friends.
Paying attention to the big moments of life, while not forgetting to pay attention to the little things, is what palliative care is all about. By definition, palliative care is a whole-person approach to care that focuses on quality of life, relief from pain and symptoms, and reducing emotional distress for a person living with a serious illness or disease like ALS.
The Scott A. Mackler, MD, PhD, Assistive Technology Program provides trained technologists to assist patients with the daunting task of identifying and applying assistive devices. These devices may include: communication technology; telecommunications; computer access; electronic aids to assist with daily living; and assistance with seating and mobility issues.
The Maureen Slattery Miller Care Fund is designed to meet the needs of people living with ALS who have a demonstrated financial need. The Fund provides monetary grants for medical, communication and assistive technology equipment; home health care; vehicle modifications; home modifications; transportation; financial assistance for medical and non-medical bills; and other financial necessities related to the cost of the disease.
The Rick and Sherry Murray Medical Futures Scholarship is designed to help the spouses, children, and grandchildren of those who are living with ALS or have lost their battle, and whose lives have been changed as a result of that experience - thus impacting their decisions to enter the medical field as a way of making a difference for future patients of any disease.