A nonprofit turning the lens of ALS toward hope, dignity, and human connection -
one story, one color, one life at a time.

A world where every person facing ALS is surrounded by dignity, support, and a community of care—where no journey is walked alone, and every life is honored with compassion, color, and hope.

Vision

What is ALS? Amyotrophic Lateral Sclerosis (ALS), often called Lou Gehrig’s disease, is a progressive neurological condition that affects the nerve cells responsible for controlling voluntary muscles. These are the muscles we use to move, speak, swallow, and breathe. In ALS, the motor neurons in the brain and spinal cord gradually stop working. As these nerve cells deteriorate, the muscles they control become weaker, eventually leading to loss of movement.

The ALS Journey: A Visual Timeline Stage 1: Early Stage Subtle changes begin What’s happening Muscle weakness or stiffness Dropping objects or tripping Muscle twitching or cramps Changes in speech or fatigue What support may look like Medical evaluation and diagnosis Physical or occupational therapy Early lifestyle adjustments Emotional and educational support Theme: Awareness and adaptation Stage 2: Middle Stage Growing challenges, increasing support What’s happening Greater difficulty walking or using hands Need for braces, walkers, or wheelchair Speech becomes harder to understand Difficulty swallowing or weight loss Increased fatigue What support may look like Mobility equipment Communication devices Feeding tube discussions or placement Home modifications Caregiver assistance Theme: Support and adjustment Stage 3: Late Stage Full-time care and advanced support What’s happening Limited or no movement of arms and legs Loss of natural speech Dependence on feeding tube Need for breathing support What support may look like Full-time caregiving Eye-gaze or advanced communication devices Respiratory support (BiPAP or ventilator) Palliative care planning Theme: Dignity and connection Stage 4: End-of-Life Stage Comfort, peace, and presence What’s happening Body becomes weaker and more fatigued Breathing becomes more difficult Increased sleep and reduced responsiveness What support may look like Hospice or palliative care Comfort-focused treatment Emotional and spiritual support Family presence and legacy moments

Is There a Cure? At this time, there is no cure for ALS, but treatments and supportive care can help manage symptoms, improve quality of life, and extend survival. Research is ongoing around the world to find better treatments and, ultimately, a cure.

The Team Behind the Mission

Kaleidoscope-ALS was born from a circle of caregivers who showed up for Ben, each bringing their own strength and perspective.

Miriam, shared a long-standing friendship with Ben that began long before ALS. Their bond was rooted in music, trust, and years of connection. From the moment of diagnosis through the full journey, she brought consistency, loyalty, and a touch of whimsy—keeping the spirit of the life Ben lived before ALS alive.

Steve, Ben’s father and Finley’s grandfather, stood as a pillar of family support. He brought strength, protection, and a steady presence through every stage of the journey, representing the deep love and commitment of family.

Ben, even while living with ALS, gave perspective to everyone around him—choosing optimism, conversation, and meaning, and inspiring the mission itself.

Micki, a neighbor and family friend, stood beside Ben as a caregiver and became one of his closest friends. She offered emotional support, listened to his vision, and remained by his side through some of the most difficult and complex parts of the journey—helping turn their shared experiences into the mission behind Kaleidoscope-ALS.

Together, each person added a different color to Ben’s life.
Those colors formed the kaleidoscope that became this mission.