“My father was the strongest man I knew, and I miss him every single day,” says Samantha C. of her father, Louis P. (dx 1990), who passed away in 2021. For the past three years, she has held a Facebook birthday fundraiser benefiting the Scleroderma Research Foundation in her father’s memory.
“On my birthday, it’s hard to celebrate when I’ve lost a piece of who I am. That’s why I hold a fundraiser in his memory—to give towards research and resources, and that’s all I need each year,” she says.
Louis was born in Amsterdam, Netherlands, on July 18, 1940, and immigrated to the United States with his family at the age of 16, seeking a new beginning after World War II. A devoted husband to his wife Maria and father to six children, Louis faced numerous health challenges throughout his life. He was diagnosed with diabetes in 1990, which required significant lifestyle adjustments.
Not long after, he began experiencing pain and strange sensations in his fingers, which he described as “tiny rocks” under the skin. After visiting multiple doctors, he finally received a diagnosis: CREST syndrome (or limited scleroderma). Louis’s journey with scleroderma proved extremely difficult for him, as Louis endured severe pain, toe amputations, calcinosis in his fingertips, and persistent itchy, flaky skin.
Samantha’s fundraisers have become a meaningful way to honor her father’s memory and contribute to the Scleroderma Research Foundation’s mission to find better therapies and ultimately, a cure.
“Scleroderma research is so important because many are suffering, and they should know that there is a community of people out there that are here to support them,” Samantha says. “Scleroderma may not be known to all, but with our help, it can be.”
You can make a difference, too. Consider hosting a Facebook fundraiser like Samantha’s and contribute to the search for a cure for scleroderma.
The Scleroderma Research Foundation extends its deepest gratitude to Samantha for sharing her father’s story and for her continued efforts to raise awareness and support research.
Pictured: Louis P. with daughter Samantha C.
