by Ashley Kus | Feb 25, 2025 | Media Room, Uncategorized
By CdLS Foundation Clinical Advisory Board (CAB) Our seven-year-old son needs to have a cavity filled but is very uncooperative at the dentist’s office. Is there any anesthesia that would help him out? I don’t like putting him through such a traumatic thing and I hate...
by Ashley Kus | Feb 25, 2025 | Media Room, Uncategorized
On Saturday, January 25, 2025, Michelle Gentry, and her family hosted the final rodeo in a five-event “Bulls and Barrels” series to raise funds and awareness for the Cornelia de Lange Syndrome (CdLS) Foundation. CdLS is a rare genetic spectrum disorder that causes a...
by Ashley Kus | Feb 24, 2025 | Media Room, Uncategorized
By The National Organization for Rare Disorders (NORD) https://rarediseases.org/ Think of 10 people you work with, 10 people you went to school with, or even 10 of your social media followers. Now, consider this: statistically, one in every 10 Americans is living with...
by Ashley Kus | Feb 24, 2025 | Media Room, Uncategorized
Parenting Special Needs Magazine : January/February 2025 Sometimes, no matter how prepared we think we are, it’s not enough. Use this guide to prepare for emergencies, and download the attached handy family safety checklist. From factors like medical requirements and...
by Ashley Kus | Feb 24, 2025 | Media Room, Uncategorized
By Addison’s Family Addie is a happy and energetic 3.5-year-old who loves swimming, riding her bike, and exploring new things. She attends a developmental preschool and is adored by her teachers and peers. She LOVES school and thrives in the school setting....
by Ashley Kus | Feb 24, 2025 | Media Room, Uncategorized
By Elijah’s Family Elijah is our five-year IVF miracle. At my 20-week anatomy scan, we received unexpected results, including a limb difference. Since we had tested all of our embryos and completed NIPT screening with normal results, our doctor was determined to...
by Ashley Kus | Feb 24, 2025 | Media Room, Uncategorized
By Charles’ Family Hello to all. I am Charles Jr, the father of CdLS warrior Charles III, aka C3. C3 was born 8 weeks early via emergency c-section in Tulsa, Oklahoma. In his first two months of life, he had various complications, but the major battle was with...
by Ashley Kus | Feb 21, 2025 | Media Room, Uncategorized
By Jonas’ Family Jonas, age 11, from upstate New York Jonas, was diagnosed with CdLS at age 9 after years of repeated medical, physical, and developmental differences led us to genetics. Testing confirmed a change in his SMC1A gene. In spite of it all, Jonas has...
by Francesca Scognamiglio | Feb 13, 2025 | In Memoriam
Corvohn has three younger siblings that miss him dearly he loved music. he loved to laugh and play and roll on the floor with his two mastiff dogs. He loved to eat his food and anyone else around him that had food he was loved by everyone he graduated from high school...
by Francesca Scognamiglio | Feb 11, 2025 | In Memoriam
My Tia Marie was such an amazing little angel from the moment she was born 11/21/13 and what an amazing new journey began. She was in the Nicu for a Couple weeks and the doctors were puzzled until we met Dr. Krantz from Chop and his assistant Sarah. Once they met us...
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