Rare Disease Day Highlights Need for Fundraising for Treatment and Research

Friday was March 10, 2023 to be Rare Disease Awareness Day in Greenwich and First Selectman Fred Camillo issued a proclamation in honor of the day, hosting an event at Town Hall with several leading local foundations focused on rare diseases.

From left, John Hopper, founding co-chair of the NORD Rare Cancer Coalition and chair of the Belmont Foundation, Alan Gunzburg, Allyson Buck from the Vanishing White Matter Families Foundation, First Selectman Fred Camillo, Andrea Marella and Phil Marella, co-founders of the Dana’s Angels Research Trust, Andrew Marella, Town of Greenwich Director of Human Services Programs Linda Sandiaes, Gregg Pauletti, founder of the Golden Lights Foundation, Town of Greenwich Director of Family Health Deborah Travers and Selectperson Janet Stone McGuigan.

One in every 10 Americans has a rare disease, but because individually these diseases are so rare, getting desperately needed money for research and patient support can be extremely challenging.

Often doctors are not even able to properly diagnose the diseases at first. Getting more attention to these rare diseases is critical and the Town has made this proclamation, which is now in its fourth year, an annual tradition.

First Selectman Camillo’s commitment to this cause began when he was a member of the state legislature and similar events were held in Hartford. Upon becoming First Selectman, he has brought this tradition to Greenwich and it is a deeply personal one for him since his sister Donna Marie passed away from leukemia as a child.

“This is something we’re really proud of in Greenwich,” he said in a release. “This is something we look forward to and we are also looking forward to continuing to expand our awareness to other months. This is something that affects everyone. When my sister Donna Marie had leukemia there was no cure but today there is a 90% cure rate. We keep doing it until you get to 100 percent.”

First Selectman Fred Camillo presents the proclamation for Rare Disease Awareness Day to Gregg Pauletti, founder of the Golden Lights Foundation.

At Friday’s proclamation representatives from the Golden Lights Foundation, Dana’s Angels Research
Trust, the NORD Rare Cancer Coalition and the Vanishing White Matter Families Foundation were all on hand, along with Town resident Alan Gunzburg, Dr. Karen Santucci from Greenwich Hospital, Selectperson Janet Stone McGuigan, Deborah Travers, the Town’s Director of Family Health and Linda Sandiaes, the Town’s Director of Human Services Programs.

During his remarks, Gregg Pauletti, founder of the Golden Lights Foundation, spoke about the challenge faced by his and other organizations that are focused on rare diseases.

“Awareness is key for all of us,” he said in the release. “Everyone here is trying to focus on research and everyone is trying to focus on making sure that our respective diseases are known.”

Gunzburg, who has been diagnosed with Adult Refsum Disease and is a past board member with the Defeat Adult Refsum Everywhere foundation, added, “We need to be able to diagnose people early. We need to have equipment and diagnostic assistance.”

The hard work that is required to raise awareness and do fundraising for treatment and research for new techniques and possible cures can be an immense burden on families because they are caregivers along with their jobs and everything that is needed with their other children. Federal, state and local support is needed and often lacking and the Town is working to improve that.

The event included discussion of how the Town can be more involved with these foundations in the future to help people with loved ones with rare diseases get the help they need. Those discussions are ongoing.