They Gave Me 2
I'm Giving 26.2
I was given just 2 years to live after being diagnosed with AL (light chain) amyloidosis, a deadly rare disease. Now 80 years old, this year marks the 20th year since my diagnosis. To celebrate two decades of survival, I am supporting the Amyloidosis Research Consortium (ARC) by walking the Honolulu Marathon on December 13, 2026.
With only around 3,000-4,000 people diagnosed each year in the U.S., those living with AL amyloidosis need your help to advance scientific research. Support my walk and amyloidosis research by donating today.
Frequently asked questions
Is this donation tax deductible?
Is my donation secure?
Do I get a receipt?
How is my personal data handled?
Where can I mail a check?
Where can I find support regarding a donation or a diagnosis?
Conversations with Hope
By Surinder Harish
One day, I asked Hope, “Tell me, who are you?”
She gazed at me, a smile serene and true.
“I am a part of you,” she whispered near,
“A guiding light, a constant cheer.”
I listened close, her words so sweet and deep,
“I make you dream, your spirit keep.
When doctors say your time is near,
I bring you hope, dispel your fear.”
As steady as the earth beneath our feet,
As vibrant as the rainbows bright and fleet,
As constant as the day and night’s embrace,
I am your hope, your guiding grace.
I teach you to accept, with grace and love,
The twists and turns of life above.
Believe in good, your heart will mend,
And I, your hope, will stay your friend.
My Updates
March 27
20 Years, 26.2 Miles: Walking for a Cure
In 2006, I was told I had two years to live. In 2026, I am walking a marathon.
My journey with AL Amyloidosis and associated Multiple Myeloma began twenty years ago with a terrifying diagnosis and a bleak prognosis. What followed were two decades of fighting — not just to live, but to walk, to breathe, and to see a future that doctors said I wouldn't have.
The Long Road Back
My battle has been defined by extreme challenges:
- Seven fractured vertebrae and three back surgeries that initially left me unable to walk across my own living room.
- A rare Factor X deficiency that made even simple procedures life-threatening due to uncontrollable bleeding.
- Years of chemotherapy cycles (CyBorD, Daratumumab, Ninlaro) that worked for a time, then failed, leaving us searching for the next miracle.
- Open-Heart Surgery in 2020 at the Mayo Clinic, where I survived 55 hours under anesthesia and multiple complications.
The Power of Research
The only reason I am here today is research. When standard treatments failed, a new regimen of Venetoclax became my "magic" solution. It stabilized my Kappa Free Light Chains and gave me my life back.
Research didn't just give me more time; it gave me the strength to overcome heart surgery, physical therapy, and the physical toll of two decades of treatment.
Why I'm Walking Honolulu
December 2026 marks my 20th anniversary of survival. To celebrate this milestone and pay it forward, I have committed to walking the Honolulu Marathon.
I am walking to:
- Honor the Science: I am a living testament to the breakthroughs in Amyloidosis research.
- Provide Hope: For those newly diagnosed who feel the same "discouragement and fear" I felt in 2006.
- Fund the Next Miracle: Every dollar raised goes directly toward finding more effective, more tolerable treatments for AL Amyloidosis.
Twenty years ago, I couldn't walk to the end of my hallway. In December, I will walk 26.2 miles. Please join me in supporting the research that makes miracles like mine possible.
March 16
I’ve Got a Trainer
To help me train for the marathon in a safe and measured way, I've hired a physical trainer to guide my daily walking and strength training. Thanks to their assistance I will be ready to walk all 26.2 miles by December, and I'll stay healthy and ready to go.
MHere's a photo of what my training walks look like in the Bay Area in California!
