WINNING WITH ALS is a charitable/educational non-profit corporation recognized by the IRS as a 501(c)(3). Our mission is to provide support for families with children still in the home who are living with a parent diagnosed with Amyotrophic Lateral Sclerosis (ALS).
The diagnosis of ALS is unlike most other life altering chronic disease diagnoses. To date, there is no cure or treatment beyond that which may delay progression. WINNING WITH ALS aims to provide support to the caregivers and their families as they navigate the waters of anticipatory grief. The early death of a parent, spouse or family member is a major life event. The entire family is affected, as even the children become caregivers alongside the primary adult caregiver. WINNING WITH ALS’s goal is to help these families focus on the time left by minimizing financial stresses, creating normalcy, and lasting memories while helping them navigate the challenges of the medical and day to day needs.
At WINNING WITH ALS we will help families navigate their searches for available drug trials and compassionate use programs and information on understanding Medicare. Through grants, we will provide financial support enabling the children to continue participation in camps, sports, school activities, the arts and other areas that provide respite.