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Minute Man Arc client graduates from self-advocacy program

by Gabbie Nadeau | Dec 27, 2018 | Media Room, Uncategorized

The following is from a submission by Stephanie Parish, Minute Man Arc. Valerie Lessa, of Concord, graduated from an eight-week Self-Advocacy Leadership Series at Bridgewater State University on Sept. 5. [Courtesy Photo] On Sept. 5, Valerie Lessa, a Minute Man Arc...

Parents host One Love, One Heart 5K to benefit rare disorder, daughter on Dec. 8

by Gabbie Nadeau | Dec 3, 2018 | Media Room

Jim and Jen Pomfret are preparing to mark the fourteenth year of the One Love, One Heart 5K Walk/Run on Saturday, Dec. 8, at 10 a.m. The event supports those who have a rare genetic disorder called Cornelia de Lange Syndrome (CdLS), including their daughter, Maya....

Local Restaurant Raises Funds to Assist Woman Bringing Awareness to Rare Disease

by Gabbie Nadeau | Nov 14, 2018 | Media Room

Throughout the month of October, Cornerstone Artisanal Pizza & Craft Beer (110 Brewery Lane, Portsmouth, NH) will be joining forces with Tabitha McElroy to raise funds and awareness for the Cornelia de Lange Syndrome (CdLS) Foundation. The menu will have a...

9th Annual Brew & BBQ Benefiting the Cornelia de Lange Syndrome (CdLS) Foundation, Nonprofit Working with Individuals with Rare Disorder

by Gabbie Nadeau | Nov 14, 2018 | Media Room

On Saturday, November 10th from 5:00 – 8:30pm, at Currahee Brewing Co. in Alpharetta, GA the 9th Annual Brew & BBQ to benefit the CdLS Foundation will be held. Last year, the event raised a net of $9,000, the highest total to date. Over the last eight years the...

National Nonprofit Holds Conference, Encourages Families to Build Bridges, in Minneapolis MN

by Gabbie Nadeau | Nov 14, 2018 | Media Room

The Cornelia de Lange Syndrome (CdLS) Foundation is holding its national conference, June 28 – July 1, at the Minneapolis Marriott City Center. This year’s conference theme is Building Bridges Together. The biennial event brings together more than 500 attendees,...

Medical & Educational Leaders Gather at National Genetic Disorder Symposium

by Gabbie Nadeau | Nov 14, 2018 | Media Room

The Cornelia de Lange Syndrome (CdLS) Foundation is holding its Eighth Scientific and Educational Symposium, June 27- 28, at the Marriott Hotel City Center bringing together leaders in the field of CdLS research and clinical work from around the United States. Through...
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Recent Posts

  • Jason Shufelt
  • Joseph (Joey) Haaland
  • 2019 Awareness Day T-shirt Contest
  • Cornelia de Lange syndrome: What every otolaryngologist should know
  • ‘Expect problems,’ she told us. I had heard those words before, yet my brain couldn’t make sense of them. ‘What kind of problems?,’ I asked, my voice trembling.’

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