On December 6, 2012, PPMD held its inaugural End Duchenne Gala in New York City. It was a truly remarkable evening thanks in large part to the organizing committee (Catherine Collins, Anessa Fehsenfeld, Janelle Hester, Vicki Singh, and Paula Zenobio) and a room full of compassionate, generous guests...including acclaimed author, Mary-Lou Weisman. Mary-Lou and her husband Larry are founders of Fund for Pete's Sake and she was kind enough to recap the evening for those of you who couldn't join.

 

Mary-Lou Weisman 

"Hope" is the thing with feathers—

That perches in the soul—

And sings the tune without the words

And never stops at all

(first stanza of “Hope” is the thing with feathers, by Emily Dickinson)

 

Hope, our constant if ephemeral companion, turned into more than one quarter of a million dollars this month at the End Duchenne Gala held in New York’s super-elegant Metropolitan Club. Add that to the $2 million already specified for clinical research in the year 2013, and that’s a lot of hope.

There was also a lot of Gala. PPMD’s Kimberly Galberaith and Ryan Fischer, along with most, but not all of those present, came in formal dress. Pat Furlong wore a sparkly top, but passed over a long skirt in favor of such a slim, pencil-wide black skirt that she was reduced to walking like a geisha. Pat, as she explained in her opening remarks before dinner, would have been wearing the sparking shoes she’d bought at considerable expense to match her top, but unfortunately she left them in a taxi on the way to the gala. Watch for them on eBay.

The event, which attracted 215 people was, in the best PPMD tradition, a family affair. Parents and children and their friends and relatives mixed with sponsors and researchers over drinks and hors d’oeuvres, while examining the silent auction items displayed on tables throughout the huge marble rotunda. Later, when we moved into the dining room, the beautiful faces of our boys – they were, after all, the stars of this show– were projected on giant screens.

The silent auction was just a warm-up for the auction itself – the noisy one -- which took place after a steak dinner. Each time the auctioneer slammed down her gavel, the crowd clapped and cheered their own soaring generosity. For a grand finale, just for the heck of it, she invited people to buy hours of research time, each hour going for $50. Individuals who had already spent thousands for a ten-day tour of India, free decorating advice, or a weekend in New York, complete with dinners and theatre tickets, couldn’t hold themselves back from buying even more research hours.

Perhaps most inspiring of all was the appearance of 6-year-old Dylan Collins who, at the close of the event, stood at the dias with his older brother Jackson and mother, Catherine Collins, one of the event’s major sponsors and organizers.

“Duchenne is what I have,” Dylan told the audience, “not what I am.” The crowd rose to its feet.

“Hope,” as the poet said, “is a thing with feathers.”

- Mary-Lou Weisman, author of Intensive Care and founder of Fund for Pete's Sake. To learn more or to read Mary-Lou's blog, visit Marylouweisman.com.


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