If you had one extra day in a given year, how would you spend it? Last week there was just such a day, and along with 110 other people I attended a fantastic party: the Congenital Hyperinsulinism International (CHI) Very Special Cocktail Party in Glen Ridge, New Jersey.
Yes, the day I’m talking about is February 29, 2012 – Rare Disease Day. By now all of you know all about Rare Disease Day and its purpose: To focus attention on Rare diseases. Rare diseases usually don’t have much name recognition and they don’t affect large numbers, yet all the needs are the same as for more common but serious ailments: funds for research toward better treatments and a cure, supportive communities to help parents find doctors who know how to treat their babies and children, PR campaigns to raise awareness about symptoms so doctors can provide timely diagnosis to stave off damage, training programs to educate doctors on treatment plans, and so much more.
It’s a day to “Care about Rare.” And we had quite a party raising $11,000 for the CHI community. Everything about the evening was unique and rare to emphasize the importance of supporting rare disease communities. The financial support from the people who came and from those who were unable to attend and donated was truly something. The vast majority of people attending the event are not personally affected by congenital hyperinsulinism (HI) but came out of a true sense of solidarity with those suffering from the rare disorder.
Let’s start with the talent. Maggie Hinchliffe, a 15 year old pianist and student at Glen Ridge High School volunteered to play for us for most of the evening. Listening to her rare talent was a delight.
The hors d’oeurvres were exquisitely prepared rare culinary delights by Montclair New Jersey’s extremely talented and world class chef, Ariane Duarte of CulinAriane. Chef Ariane and Michael Duarte generously donated all of the ingredients for the marvelous dishes that Ariane prepared on site for us. Just imagine culinary delights like Venison chili in phyllo cups with goat cheese, bacon wrapped dates and artichoke boursin beignets. I am truly awed by Ariane’s altruism and talent.
There were so many ways Ariane could have spent her extra day of the year and she chose to dedicate herself to a cause with which she had no personal connection. I should also mention the expert servers: a cadre of enthusiastic volunteers from Glen Ridge High School and Kent Place. They were all very fashionable in their CHI “Be My Sugar” shirts.
Sharon Sevrins, owner of Amanti Vino and Montclair New Jersey’s local wine expert selected outstanding wines made from rare grapes in rare regions for guests to enjoy. One wine we served was made of the Gruner Veltliner grape from the Niederosterreich region of Austria. Have you heard of that? It was delicious.
The speakers played a large role in making the evening quite special. Dr. Charles Stanley, one of the leading pediatric endocrinologists in the world specializing in HI came all the way from Philadelphia to share information about the disorder making the struggles of those living with HI come alive. Ms. Kristin Crossland, an advocate for people with HI, and a contender for the Miss New Hampshire Beauty Pageant, gave a passionate speech about the importance of supporting people with rare conditions.
The real take away of the evening for me is how a local community rallied around our family to support our son and the others across the world with HI. It has been so heartwarming and reassuring to learn that people will give so much of themselves for such a rare cause. All in all, It was a fantastic evening hosted by Lynn Neils who offered her beautiful home for the event. Lynn’s house is a rare Victorian beauty which is also fitting for our theme. We are still taking donations in honor of Rare Disease Day. To donate please go to https://congenitalhi.org/glenridgeevent.php.
