ALS, also known as Lou Gehrig’s Disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. The disease robs people of the ability to walk, talk and even blink an eye. It traps them inside a body they no longer can control and ultimately prevents them from breathing as it takes their life. People with ALS lose the power to use their legs, hold someone close, and say, “I love you,” before their bodies gradually shut down. . From onset to diagnosis, life expectancy is 2 – 5 years.
Camp HLC (Hope Loves Company) is a three-day, overnight retreat for children and young adults, ages 6-21, who have or have had a loved one battling ALS, as well as their families. It is an opportunity to have fun, to be challenged through team building exercises and to meet peers who share in their experiences.
Camp is provided free for our ALS families by Hope Loves Company and our sponsors. All meals and activities are included.
All Together Now: Perspectives on Organizing Your Medical Care and Maximizing Your Team’s Effectiveness
This session will feature a panel of people living with ALS, Caregivers, and Clinic Professionals and allow time for Q and A from the audience. Tools such as the Critical Medical Information app and other strategies will be discussed.