This page honors the lives of those who have been part of The Steffens Scleroderma & Degos Disease Foundation community—as board members, volunteers, patients, family, and friends. Each person listed here has contributed to our mission in their own meaningful way. Tributes are presented in alphabetical order.
In Memoriam
In Loving Memory of Ernie DuPont
Ernie DuPont was the kind of person whose dedication spoke louder than any words ever could. A steadfast supporter and cherished friend of the Steffens Foundation, Ernie gave not only his time and resources but also his heart. His quiet strength, generosity, and unwavering belief in the foundation’s mission helped shape its path and deepen its reach.
Ernie’s commitment was rooted in compassion—a genuine desire to make life better for others. He believed in the power of community, in the importance of lifting one another up, and in creating hope where it was needed most. Whether through his involvement in events, advocacy, or behind-the-scenes encouragement, Ernie’s presence made a difference that can still be felt today.
Those who knew Ernie remember his kindness, humility, and humor—qualities that turned good work into great impact. His partnership with the Steffens Foundation was more than service; it was a reflection of who he was: a man of integrity, heart, and purpose.
As we honor his memory, we also celebrate the legacy he leaves behind—one built on compassion, commitment, and an enduring belief that together, we can create change. The Steffens Foundation stands stronger today because of Ernie’s faith in its mission and his dedication to the people it serves.
Ernie DuPont’s spirit continues to guide us—a reminder that generosity is not measured in what we give, but in the love we share and the lives we touch along the way.
In Loving Memory of Melissa Marquis
It is with heavy hearts that we honor the life and legacy of our dear friend and tireless advocate, Melissa Marquis.
Melissa was born in New London, CT on April 28, 1978 to Eugene S. Marquis II and Debra (Boissonault) Marquis. She was the younger sister to Danielle Marquis Holton.
Melissa grew up in Bristol, CT. She attended St. Matthew’s Elementary School and was in the Color Guard at Bristol Eastern High School.
Melissa went to several different colleges and universities to broaden her education. She worked as a CNA at Hartford Hospital on her last year of high school and upon high school graduation she attended Capital Community College to get her Associates degree in nursing. Melissa began nursing at Hartford Hospital but continued her education graduating from Phoenix University with her BA in Nursing. Melissa continued on in her nursing career working with Cystic Fibrosis patients. After a couple of years, Melissa decided to go back to school to get her Master Degree in Bio Security and Disaster Preparedness becoming the first graduating class of St. Louis University with the new degree. After graduating, Melissa left floor nursing and began to pursue her new career in Public Health with the Bloomfield and Farmington Valley Health district. Within the last few years she transitioned to the West Hartford and Bloomfield Districts along with the West Hartford Fire Dept. where she remained until her passing.
Melissa’s journey with scleroderma was not an easy one, yet she faced it with extraordinary strength, courage, and grace. Rather than letting the disease define her, Melissa chose to transform her experience into a source of advocacy, education, and hope for others. Her voice carried the stories of patients, her actions built bridges of understanding, and her unwavering determination pushed awareness forward in powerful ways.
Melissa shared her journey openly, including through her writing in RARE. She once reflected:
“I have a seemingly normal life, I think most days, as I stroll into work, or run past a child learning to ride their bike on a trail. I look and sometimes even feel normal. But if I’m honest, most days I don’t feel normal… I can’t think of a day in the last nearly 15 years that there wasn’t something causing me pain, keeping me up at night; a day when I wasn’t feeling fatigued or struggling with brain fog, and lately I’ve had trouble with more and more of my organs.”
Her honesty and vulnerability gave others the courage to speak their truth. She didn’t shy away from describing the reality of living with scleroderma—what she called “a game of whack-a-mole with my body”—but she also shared the good days, the moments of strength, gratitude, and resilience that made her such an inspiration.
Through her years of involvement with the Steffens Scleroderma Foundation, Melissa became a cornerstone of our mission. She was a dedicated member of the Education and Awareness Committee, where she worked tirelessly to recruit and support patient educators who shared their stories to bring real, lived experiences into the medical education space. For three years, she played an essential role in helping to organize our Interprofessional Education (IPE) events, coordinating patient educators and ensuring students heard firsthand what it means to live with scleroderma. Her work strengthened our programs and left a lasting impact on both patients and future healthcare providers.
Melissa was also a gifted writer. She authored her book, Invisible: A Nurse-Turned-Patient's Resource to Living Well with Autoimmune Disease, weaving her creativity, insight, and lived experience into a story that reflected her unique spirit and resilience. This accomplishment was yet another testament to her determination and her ability to inspire others through words as well as action.
Melissa was deeply loved and profoundly respected—not only by those of us at Steffens but also by the entire scleroderma community. Her kindness, warmth, and determination left an imprint on every life she touched. She was more than an advocate; she was a friend, a mentor, and an inspiration.
Her passing leaves an emptiness that words cannot fully capture, but her legacy will continue to shine brightly. We will honor her memory by carrying forward the work she cared for so deeply, and by holding close the lessons of compassion, courage, and perseverance she taught us all.
Melissa will be greatly missed, but never forgotten. 💜
On behalf of the Board and the entire Steffens Scleroderma Foundation family, we extend our deepest love and gratitude for Melissa’s life, her work, and her enduring legacy.
Written by Amy Gietzen
In Loving Memory of Lou Renna
Lou Renna was a man whose courage and kindness left an imprint far deeper than words can capture. Those who had the privilege of knowing Lou remember his steady strength, his humor even in hardship, and his unwavering love for his family and friends. He lived with quiet dignity and faced every challenge—including his battle with Scleroderma—with a grace that inspired everyone around him.
Lou Renna was a son, husband, father, grandfather, brother, uncle, and friend to many. Lou battled scleroderma for approximately ten years and his journey was not an easy one. Over the years, the disease caused physical changes and robbed Lou of his energy and strength, but never altered his spirit or courage.
Scleroderma is a very difficult disease to diagnose, as it was for Lou, and presents differently in everyone. Lou’s first symptoms were Raynaud’s, telangiectasias on his face, and tightening of the skin on his legs. As the disease progressed, Lou developed pulmonary hypertension, GI symptoms, and compromised kidney function. Lou took various medications, and used oxygen to help manage the progression and symptoms of his disease.
Lou channeled much of his time and energy into raising awareness and funds in hopes of finding a cure for scleroderma. He was a member of the Steffens Scleroderma board of trustees and extremely dedicated in his support of the Steffens Scleroderma Foundation’s efforts. In fact, five days before his sudden death in 2017, feeling tired and short of breath, Lou attended the annual Cruise for a Cure fundraiser aboard the Dutch Apple with the hope of raising awareness and money to help fight this terrible disease.
Lou’s journey was not defined by illness, but by perseverance and purpose. He met each day with resilience and an unshakable will to bring awareness to the rare condition that affected his life. In doing so, he became a voice for others—proof that advocacy can rise from even the most difficult paths.
The Steffens Scleroderma Foundation honors Lou’s life and legacy through its ongoing commitment to supporting Scleroderma research, education, and patient advocacy. Lou believed in the power of community and compassion—values that continue to guide the foundation’s work today.
His story reminds us that hope is not the absence of struggle, but the strength to stand tall in the face of it. Lou’s light continues to shine through every effort made to advance understanding, find treatments, and bring comfort to others walking a similar journey.
Lou Renna will always be remembered—not only for his courage, but for the kindness and humanity that defined him. His legacy lives on in the compassion he inspired and in the foundation’s continued mission to turn pain into purpose.