—OUR STORY

We founded Hope 4 AL Amyloidosis in 2025 after witnessing firsthand the devastating impact this disease can have on a patient and their entire family.

On September 25, 2024, my brother was diagnosed with AL amyloidosis. In that moment, our lives changed forever, and he began the fight of his life. As weekly chemotherapy treatments became part of our new reality, we discovered how difficult it was to find clear information, meaningful support, and reliable treatment resources. Sharing his story gave us a renewed sense of purpose and inspired us to help other families facing the same uncertainty.

Looking back, there were early signs during my brother’s decline that might have pointed to the disease, but they were not recognized. We were fortunate to have family members and friends with medical experience who helped us find appropriate specialists and treatment centers. We know that many families do not have access to that knowledge and may be left unsure of what to do next or where to turn for help.

My brother continues to receive chemotherapy and immunotherapy and feels confident in his treatment plan. Still, AL amyloidosis affects far more than the body. It brings emotional strain, uncertainty, and difficult questions about the future. Although treatments and clinical trials may help control the disease and extend lives, there is currently no cure. There are promising treatments seeking approval that may change the prognosis. For our family, every day together is a blessing.

Through Hope 4 AL Amyloidosis, we are committed to increasing public awareness, promoting earlier recognition, and connecting patients and their families with helpful information, support, and treatment resources. No family should have to face this journey alone.

— MISSION AND VISION

To increase awareness and understanding of AL amyloidosis through education and community support.

We envision a future where AL amyloidosis is widely recognized, quickly diagnosed and effectively treated.

A world where no patient faces this disease in isolation and every patient and family has access to understandable information, resources and the support they need.