Welcome to ALS First Star

ALS First Star is a labor of love started by Kathleen Ellen—in honor of her mother, Pat, who was diagnosed with ALS in 2010. Kathleen is inspired by, and dedicated to, spreading awareness of ALS.

Kathleen’s first book, Smile With Me Forever and Ever: Even With ALS, was inspired by Pat’s relationships with the children in her life. Pat realized how difficult it was to talk to her young friends about the progressive nature of ALS. If she could find a way to explain the symptoms of the disease, in terms that could easily be understood, she hoped she could help other families dealing with the same issues.

This book is designed to help young children understand the sudden physical deterioration and life changes that a loved one with ALS is experiencing.  A gentle structure of guidance and communication is provided, while the fear of loss is confronted.  Encouragement is given through special memories, continued experiences, and the belief that everlasting hearts will smile forever.  In Kathleen’s search for the perfect artist to help tell the story, she was introduced to accomplished illustrator—Erin Ambrose—who provided lovely watercolor illustrations with affectionate characterizations and uplifting colors.

Thank you for allowing us the privilege of extending our hearts to the ALS community.

About ALS

Amyotrophic Lateral Sclerosis (ALS) is also known as Motor Neuron (Neurone) Disease (MND), and is popularly referred to as Lou Gehrig's Disease.  It is a fatal, progressive, neurological disease with no known cause or cure.  ALS attacks the motor neurons responsible for communication in the neuromuscular system.  The neurons degenerate, leading to muscle atrophy and eventual paralysis.  Fortunately, abilities to see, taste, hear, smell, and recognize touch are unaffected by ALS.  Additionally, intelligence, awareness, and continued loving relationships are unaltered.

According to the National ALS Association (ALSA), ALS usually affects people between the ages of 40 and 70, with an average age of 55.  There have been cases of people as young as 20 afflicted with the disease.  There are more than 20,000 Americans with ALS, at any given time and roughly 5,000 are diagnosed each year. The ALS Therapy Development Institute estimates 450,000 ALS sufferers worldwide.  Typically, the life expectancy of those with ALS is 2-5 years, from the onset of symptoms. You can find more information on ALS on the Resources page.