2020 Conference Update
We are sad to inform you that due to the uncertainties of COVID-19, our 5th International Family Education and Awareness Conference is postponed indefinitely. This decision was tough for the Board to reach. So many of you have told us how much you look forward…
Read More24 Hours in the COVID-19 Ward with Marie
Welcome our Guest Blogger: Yssa DeWoody, Ph.D., Mother, Cofounder of Ring14 USA, President of Ring14 International We are taking the COVID-19 pandemic very seriously in our house. This is because, even under the best of circumstances, our youngest daughter, Marie, is medically fragile due…
Read MoreCOVID-19
IFCR has continued to receive updates from our COE network directors regarding COVID-19. Dr. Tim Benke has shared a few of his COVID concerns with us, and we want to share his recent advice with not only our CDD families but also with the developmental…
Read MoreSpotlight: Kristina Cotter, MS, PhD, CGC
In honor of our 10th anniversary, we are presenting this spotlight on Kristina Cotter, MS, PhD, CGC, who is the Research Director at RDMD. Tell us about your research (assume we know nothing). I manage a portfolio of research projects at a company that focuses…
Read MoreSecond Edition: We Learn
Chatting with Haley and Poppy Second Edition: We Learn Let’s get right to the heart of the matter on this communication thing. Let’s drill down to the basics and focus on what it is like to sit in my wheelchair. I can’t talk; I can’t…
Read MoreCDKL5 Spotlight on Grayson
Meet Grayson, our CDKL5 December Spotlight! Mom, Kaylee, shares his story! My husband and I battled unexplained infertility for 3 years. You can imagine the surprise we felt when those two pink lines popped up on the pregnancy test. We were overjoyed that our time…
Read MoreSpotlight: Zhaolan (Joe) Zhou, PhD
In honor of our 10th anniversary, we are presenting this spotlight on Joe Zhou, PhD, who is an Associate Professor in the Department of Genetics at the University of Pennsylvania. Where do you work? University of Pennsylvania Tell us about your research. (Assume we know…
Read MoreCDKL5 Spotlight on Savannah
Meet Savanah, our CDKL5 November spotlight! Mom, Kelli, shares her story! Savannah Maeve Taylor was born on October 23rd, 2016. She is my third child and we were so excited that I was finally having a girl. I’m in the skincare industry and I envisioned…
Read MoreFirst Edition: We Are Here
Chatting with Haley and Poppy First Edition: We Are Here First, we would like to introduce ourselves. I am Haley Hilt, a 12-year-old CDD girl and my partner is my Poppy. He has helped Mommy and Daddy care for me since birth. We live together…
Read MoreSpotlight: Jenny Downs, BAppSci, MSc, PhD
In honor of our 10th anniversary, here is a spotlight on Jenny Downs, BAppSci, MSc, PhD. She is an Associate Professor and also co-leads the Child Disability team and the Australian Collaboration to Enhance NeuroDevelopment at Telethon Kids Institute. Where do you work? Telethon Kids…
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