IFCR Research Goals for 2019
Severity Scales and Outcome Measures Our CDKL5 Centers of Excellence continue to lead the way in CDKL5 care and treatment. One obstacle to developing treatments is a lack of clearly defined measures that would allow comparison of CDKL5 symptoms and severity. For instance, cancer tumors…Read More
Laughing is a Specialty
Guest Blogger – Kim Nothdurft Want to share your CDKL5 family stories? Talk to us about writing a guest post! Last week I sat with our 16 year old daughter, Lily, at one of her many specialists appointments. This time it was her Gastroenterologist, ie…Read More
2019 Family Hopes and Dreams
We asked our Facebook community what hopes and dreams they have for their family in 2019. Here is what they shared: Randi: live her best quality of life possible! Dawn: In the new year I hope my loved one with CDKL5 has the best of health…Read More
CDKL5 Spotlight on Baybeblue!
]It’s time for another Cdkl5 Spotlight! Meet birthday girl Baybeblue! Mom, Cynthia, shares about her wonderful daughter and their amazing journey. Baybeblue was born January 11th, 2007 and was a typical pregnancy and birth. She scored 9 on her apgar because the doctor said he…Read More
A Look Back at 2018 IFCR Research
When IFCR was founded, one of our primary goals was to inspire more research into CDKL5 Deficiency Disorder. As we look back on 2018, we want to share with you the amazing scientific work your support of IFCR makes possible. CDKL5 Centers of Excellence IFCR…Read More
CDKL5 Spotlight on Tanner!
It’s time for another Cdkl5 Spotlight! Let’s meet Tanner! Mom, Courtney, shares about her special boy. Tanner began seizing at 3 months old. We received a diagnosis of Epilepsy at that time and thanks to Phenobarbital, he went the next 3 months seizure free! Due…Read More
CDKL5 Spotlight on Natalie!
We are happy to share another Cdkl5 Spotlight! Meet 12-year-old Natalie! Mom, Sandy, shares with us about her beautiful daughter. Natalie received her CDKL5 Deficiency Disorder diagnosis at the age of 6 and she has done PT, OT, and Speech since the age of…Read More
CDKL5 Spotlight on Brooklynn!
Spotlight on Brooklynn! Mom, Ashley, shares about her sweet daughter. Brooklynn is 3.5 years old and lives in San Diego, CA with her family. She began having seizures at 2-months-old and received her Cdkl5 Deficiency Disorder (CDD) diagnosis at 9-months-old. Along with CDD, Brooklynn also…Read More
CDKL5 Spotlight on Bennett!
Meet 2-year-old Bennett! He lives with his mom, Kara, dad, and 4-year-old brother, Parker, in California. Bennett’s noticeable Tonic Seizures started at 7 ½ months old, although he may have been having Infantile Spasms long before that. Once his seizures started, we got genetic testing…Read More
CDKL5 Spotlight on G!
Time for another spotlight! Mom and super supporter, Marissa, tells us about her amazing son, G, and how they support the IFCR! Our son, G, was diagnosed with CDKL5 Deficiency Disorder at six months old. Our neurologist recommended genetic testing after we failed to find…Read More