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
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.
When Jules and Maria started a podcast in 2019 to tell their story it wasn’t about ALS. But even though Jules’ ALS diagnosis in 2020 would change that, their story is still about so much more—including life, love, and even comedy.
Today is Rare Disease Day, an event that takes place worldwide, typically on the last day of February each year, to help raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives. In recognition today, Kristina shares what it’s like to be a ALS caregiver for her husband, Lamar, and her unique perspective on the rarity of ALS.
On behalf of everyone living with ALS and their families, the ALS Association sent a letter this week to members of the House and Senate demonstrating our support for the passing of the ALS Better Care Act which will increase access to multidisciplinary care clinics for people living with ALS.
The physical impact of living with ALS presents many challenges, especially as the disease progresses. With the help of assistive technologies, people living with ALS can maintain their independence and pursue their passions for as long as possible.