On December 8, Jim and Jen Pomfret will mark the twelfth year of what is called the “hottest 5K of December”. As the One Love, One Heart 5k slogan reads, “One love refers to the universal love and respect expressed by all people for all people.” At the event, this love is directed towards those […]
Save the date for the Southeast Region Family Gathering! Hosted by Angie Young and being held in Fort Myers, FL. Join families in the southeast region to spend time together talking, sharing stories, laughing, and learning from one another. The connections made between parents, grandparents, children, relatives, and professionals can last a lifetime. Who better […]
Hosted by Courtney Hegarty, AZ Regional Coordinator
(Serving individuals with CdLS who are 18 years old and younger) For more information contact Lynn Audette at LAudette@CdLSusa.org
Many runners say that running has changed their lives. Team CdLS runners say that they have changed the lives of others. Kick off the running season with the Cornelia de Lange Syndrome (CdLS) Foundation at the United Airlines NYC Half Marathon Sunday, March 17, 2019 The CdLS Foundation will be there with you every step […]
Hosted by Fran Rissland, mom to Riley For more information contact Fran at fran_rissland@hotmail.com
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This webinar will discuss: • Clinical vs genetic testing • Various gene mutations associated with CdLS • Genetic testing that is available (including prenatally) • What are the benefits of getting tested • Are there different medical approaches to treatment for the various gene mutations Presenters: Sarah Raible, M.S., C.G.C., is a Genetic Counselor and […]
Save the date for the Midwest Family Gathering! Hosted by Christy and Dave Whetstone! Join families in the midwest region to spend time together talking, sharing stories, laughing, and learning from one another. The connections made between parents, grandparents, children, relatives, and professionals can last a lifetime. Who better to talk about what it’s like […]
