by Ashley Kus | Dec 20, 2024 | Media Room, Uncategorized
by Shauna Muckle, Tampa Bay Times/TNS disabilityscoop.com Mary Benhart’s family gushed about Disney World’s willingness to accommodate people with disabilities in an ad for the company last year. “You can actually relax as a special-needs family,” Benhart said,...
by Ashley Kus | Dec 19, 2024 | Media Room, Uncategorized
By Lindsey’s Family Our journey with Lindsey, who was diagnosed with Cornelia de Lange Syndrome (CdLS)NIPBL mutation, has been filled with challenges, triumphs, and invaluable lessons. From medical hurdles like feeding struggles, hearing loss, and seizures to...
by Ashley Kus | Dec 17, 2024 | Media Room, Uncategorized
By Oliver’s Family Oliver is an incredible 8-year-old boy who was diagnosed with CdLS (missense NIPBL mutation) when he was 9-months-old. Ollie has secondary diagnoses of central auditory processing disorder and epilepsy – but thankfully his seizures have...
by Ashley Kus | Dec 16, 2024 | Media Room, Research News, Uncategorized
By Shaun Heasley disabilityscoop.com Lego is introducing new characters outfitted with an internationally recognized lanyard designed to quietly indicate that a person has a hidden disability and might need some extra support. The company said this month that it is...
by Ashley Kus | Dec 12, 2024 | Media Room, Uncategorized
By Gunner’s Family Gunner was born January 9, 2021, a month early. He was in NICU for 3 ½ months and he was diagnosed with CdLS, and our life was forever changed. Gunner is now 3 ½ years old and he is feed by feeding tube. Gunner does not walk but he just...
by Ashley Kus | Dec 11, 2024 | Media Room, Uncategorized
By Sydney’s Family Sydney is currently 14 years old and in 8th grade. She loves going on airplanes, staying at hotels and Airbnbs. She was really excited for this trip. She loves doing gymnastics, swimming, and jumping on the trampoline. She adores her sister...
by Ashley Kus | Dec 11, 2024 | Media Room, Uncategorized
By PSN Team parentingspecialneeds.org Did you know that there are over 8,000 different sports in this world? Yes, 8,000! There are physical sports, mind sports, board sports, equestrian sports, the list goes on. There is even a sport called “Wifecarrying” if you can...
by Ashley Kus | Dec 4, 2024 | Media Room, Uncategorized
By Mikayla’s Family Mikayla was a Special Olympics gold medal winner in 8th grade at the Illinois State Games. She loves music from classical to country and everything in between. Her favorite food is sushi. You will always find her wearing red nail polish. She...
by Ashley Kus | Dec 4, 2024 | Media Room, Research News, Uncategorized
By CdLS Foundation Clinical Advisory Board (CAB) Speech (and communication device) What should the speech therapist be doing to help my 2 ½-year-old daughter start talking? My daughter has been seeing a speech therapist since birth. We would like to know if the...
by Ashley Kus | Dec 4, 2024 | Media Room, Research News, Uncategorized
By CdLS Foundation Clinical Advisory Board (CAB) Sleep Difficulties Mother reports irregular sleep patterns and states that son only has restful sleep when he has taken his Tegretol (it knocks him out). What are your thoughts of cause or suggestions of treatment? If...
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