For many in the scleroderma community, Cos and Ronni Shulman Mallozzi are household names.
Together they served the scleroderma community for more than 30 years. Cos served as the Foundation’s Board Chair and his late wife, Ronni, who was diagnosed with scleroderma in 1990, played an instrumental role in promoting a merger between the United Scleroderma Foundation and the Scleroderma Federation, which resulted in the National Scleroderma Foundation of today.
Throughout the years, the dynamic duo was a powerful force in raising awareness about scleroderma, but their early years weren’t as bright.
In a 2022 interview, Ronni shared that when she was diagnosed, “I was frightened. The internet was in its infancy, not much of a resource. What I found in the library were medical sources that showed the worst-case scenarios: very ‘visual’ cases of severe skin tightening.”
Meeting different people with scleroderma gave Ronni new insight into life with scleroderma. Eventually, Cos attended a conference with her, and was pleased to see a diverse group of patients—many living full, long and productive lives, which gave them both hope.
A skilled public relations professional, Ronni had her own firm, but she closed her office due to the exhaustion brought on by scleroderma. Her talent coupled with her passion to help newly diagnosed people and their families gave Ronni the impetus to get involved with the Foundation.
“Persuasive writing was my forte and I had a useful message to convey. I wanted others to know that a scleroderma diagnosis wasn’t necessarily a death sentence, that scleroderma was a very variable disease affecting everyone in a different way. I wanted other people to know there was hope and help.”
Thus began Ronni and Cos’s involvement in the National Scleroderma Foundation. Over the years, Ronni attended conferences and support group meetings, wrote articles and speeches, and Cos led numerous fundraisers over the decades raising nearly $800,000 for scleroderma research.
“The Foundation has played such a critical role in our lives for the past 30+ years,” Cos said. “Getting to know the top doctors and researchers, see the progress that is being made in research, see the commitments of our pharmaceutical partners, witness the incredible work of our chapter and support group volunteers…it’s all second to none. Being so involved gave us a new purpose in our lives.”
Cos and Ronni also loyally supported the Foundation’s mission through their charitable giving. When Ronni passed away in 2023 due to complications related to scleroderma, Cos and his family knew they wanted to do something to honor her memory, and her lifelong commitment to the cause.
“My family and I are so grateful for the incredible support we’ve experienced from the scleroderma community. Ronni touched so many lives, and we established the Ronni Shulman Mallozzi Memorial Endowment to allow her memory to live on, and for us to continue the important work she started so many years ago,” shared Cos.
The Ronni Shulman Mallozzi Memorial Endowment will support juvenile scleroderma education and research.