OUR STORY
James: Family, Service, and Courage
A Life of Service
James was a devoted husband, father, son, and brother. He served through St. John’s Church in Darien and spent more than a decade on the Pacific House Board, helping address homelessness in Lower Fairfield County.
His Twin Brother, Thomas (Tom)
Tom stood by James throughout his illness. He donated blood, skin, and bone marrow to support ALS research. His care and devotion brought James comfort and support.
Courage in Research
Despite pain and discomfort, James took part in research with hope that his contributions would deepen our understanding of ALS and help future patients.
How Researchers Remember James
Researchers remember James’s positive attitude and generosity. Although scientific knowledge at the time was insufficient to save his life, his participation contributed to groundbreaking discoveries that continue to guide their research.
Encouraging the Research Team
James urged researchers to continue their work, even when procedures were difficult for him. His determination and willingness to contribute left a lasting impression.
Gratitude to Patients and Families
The Foundation is grateful to every patient and family who contributes to ALS research. Their time, experiences, and biological samples help researchers find answers.
JAMES’S MEDICAL JOURNEY
From First Symptoms to Diagnosis
December 2016: First Symptoms
An avid skier and tennis player, James noticed weakness in his right hand after an intense ski trip. Around the same time, he felt weakness in his right shoulder while playing tennis.
Searching for Answers
James consulted several doctors. Some recommended shoulder surgery. Another recognized that weakness in both his hand and shoulder could signal a neurological condition, including ALS.
July 3, 2017: ALS Diagnosis
James was diagnosed with ALS at NYU. His family recalls that he was initially told he might have only one year to live. The news came as a profound shock.
Further Evaluation at Columbia
James sought a second evaluation at Columbia Presbyterian. After reviewing his symptoms and diagnosis, the team considered that his disease might progress more slowly.
A Different Outlook
According to his family, the specialist team discussed an estimated prognosis of two to five years. This was an individual estimate, rather than a certainty.
Strength After Diagnosis
After the initial shock, James found strength in faith and gratitude. Tom recalls that James felt blessed by his life and accepted God’s will while remaining determined to face the disease.
JAMES’S MEDICAL JOURNEY
Seeking Answers and Sustaining Hope
Spring 2018: Research at UCLA
His family recalls that James began working with Dr. Anahid Jewett around spring 2018. He traveled to California to participate in research aimed at better understanding ALS.
Exploring Treatment Options
Over the following years, James explored drug treatments and physical therapies. He traveled to Florida for therapeutic options and to California to continue working with Dr. Jewett.
Hope for Others
James hoped that insights from his experience would help others living with ALS. His willingness to participate in research reflected that hope and commitment.
Faith and the Journey to Lourdes
James traveled to Lourdes, France, with the Order of Malta, seeking spiritual healing. He later became a Knight of Malta and supported similar pilgrimages for others living with illness.
August 2020: Foundation Established
The Calcagnini ALS Foundation was established during James’s lifetime. His determination to find answers helped shape its mission to support ALS research.
December 7, 2021: His Legacy Continues
James passed away on December 7, 2021. His courage, generosity, and determination continue to inspire the Foundation’s work.
