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.
Amanda Howard has always used writing to process things personally and professionally. When she faced the challenges of living with ALS, she started blogging about it - at first for herself, and then for the community.