On February 28, 2013, Congenital Hyperinsulinism International held its second “rare” event in honor of the 6th Rare Disease Day in Montclair, New Jersey at the historic and beautiful Van Vleck House. The purpose of “A Very Special Cocktail Party” was threefold: to raise awareness of the needs of all rare disease patients, to share information about the rare condition congenital hyperinsulinism, and to raise funds for Congenital Hyperinsulinism International (CHI), so that CHI can continue its mission to support patients and their families living with the rare disorder.
The evening was an unqualified success. 120 people attended and donated to the event and an additional 47 individuals and couples made donations but were unable to attend. Guests included CHI board members Randy and Jeff Hart, nurse specialist Susan Becker, a key member of the Children’s Hospital of Philadelphia Congenital Hyperinsulinism Center, congenital hyperinsulinism patients and their families, local friends, and friends and family who had traveled from quite a distance to attend. There were also 4 corporate sponsors, Athena Diagnostics, Biodel, Boiling Springs Bank, and Xoma, and two family sponsors, Amy Graydon and Dan Kaplan and Sue and Sean Cullinan. All sponsors made very generous donations to make the event possible.
At the event wines from rare regions made of rare grapes from Amanti Vino were paired with appetizers of rare quality prepared by Michelle, a chef with CulinAriane. There were also homemade chocolates, macarons and small cakes from Petit Paris in Montclair. Maggie Hinchliffe, a young woman of rare talent, played the piano for the event, for the second year in a row.
“What a beautiful and inspiring event,” said Jill Simmons who attended the event. “We were surrounded by amazing, brilliant people, all committed to the lives of children. I feel honored to be a small part of it.”
Mary Cobb, Senior Vice President for NORD, the National Organization of Rare Disorders, put the whole event in context. She explained the history and importance of Rare Disease Day, and how advocacy has made a real difference in the lives of patients. Rare Disease Day has become a very international movement with events in 60 countries. The slogan for this year’s Rare Disease Day celebration was “Rare Disorders Without Borders.”
Leading pediatric endocrinologists Dr. Diva DeLeon and Dr. Charles Stanley from the Children’s Hospital of Philadelphia, and Dr. Paul Thornton from Cook Children’s Hospital in Fort Worth, TX, spoke about congenital hyperinsulinism: how the disorder affects patients; the progress that has been made in treating the disorder; the danger to the lives and brains of patients when diagnosis and treatment are delayed; and the difficulties many patients have accessing excellent medical care and medication. All three of these physician-scientists have a gift for explaining complicated medical information in understandable terms. All three traveled from a distance to be with us and many guests commented on the tremendous qualities of these three doctors: brilliance and a commitment to patients and their families. All three are essential members of the Scientific Advisory Board of CHI. Rianna Sommers, a junior at Muhlenberg College, shared with guests what it is like to be a patient with congenital hyperinsulinism. While her words described a disease that places a great burden on patients and families, Rianna’s bubbly, positive personality and resilience were quite apparent. About these speeches, Liza Dawson, a guest said “they were the perfect blend of meaning and camaraderie and insight.”
I spoke about the need for community support from family, friends, and those who have experienced the condition first hand. I shared how amazed we are at CHI by the outpouring of support from people who are unaffected by the disease, and how important it is that those unaffected “care about rare.”
The importance community plays in our lives was evidenced by the committee members who dedicated hours of their time to planning and working this event. Kristen Carlberg, Amy Graydon, Katherine Hinchliffe, Lori Loebelsohn, Susan Morton, Kate Potters, Lynn Neils and Jennifer Schmitt were essential to every aspect of this event. In total, seventeen committee members and fifteen of my son Ben’s classmates from Glen Ridge High School made this event possible. These students are there for Ben each and every day at school, not just one night of the year, on Rare Disease Day. They are extremely caring and are a big part of the reason why Ben focuses on his full life rather than on how complicated it can be to manage the condition and the disabilities it has created. In summary, Kelly Forsyth, a guest, described the evening this way: “What a great event: great people, beautiful place, amazing food and so full of love.”
-Julie Raskin
