Recently we caught up with UConn School of Public Policy (SPP) MPA Fellows alum Dennis Rinaldi about his keynote address at a recent Proteus Syndrome Foundation conference. Learn about Dennis’s experience in his own words below. Note: Dennis sent us his story last week after the conference occurred October 11th and 12th. He references last weekend, though this event occurred two weeks prior to this publication.
Over the weekend I had the opportunity to attend and present as the keynote speaker at the Proteus Syndrome Foundation (PSF) conference alongside multiple presenters from the National Institutes of Health (NIH). Throughout the weekend, I talked with families from around the world who were impacted by this brutal disease. They all spent the weekend gathering information from presenters about the disease and its degenerative aspects.
As part of my keynote speech, I included information and a video about Hole in the Wall and how it impacted both my life and my brother, Daniels. Daniel passed away in August 2023. Many families came up to me after my talk and asked for more information and how they could get involved. I sent many of the families follow up emails sharing general information as well as links to the website and application information for various serious fun camps around the world based on where each family was located.
One of the families I got acquainted with lives in Ireland. They mentioned they had heard of a camp in their country called Barretstown, but never got around to applying. After this weekend, I believe I finally sold them by putting in an application!
Other families from the weekend truly came from all over the world. I was blown away by each family’s commitment to helping their children with Proteus Syndrome. Many families shared with me that they are flying in from places like Singapore, England, and Peru MONTHLY to participate in clinical trials at the NIH. It was a common thread that I was finding that all families are feeling exhausted and looking for community.
Kim, the founder of PSF, has made it her life’s work in pushing the research, awareness, and advancements behind this disease making major progress and development. I would like to make my life’s work dedicated to improving the community and lives of kids with proteus syndrome by giving them a camp-like experience! Kim asked me to help PSF host a camp next summer! My goal is to build a community and network within this micro rare disease, centered around having fun.
I would like to mention that in June of 2025 I will be taking the lead on a Camp for families impacted by proteus syndrome at the Barbara C. Harris Camp site in New Hampshire!