“Patient Champion” – Amy
“Patient Champion” – Amy A couple of weeks ago, we participated in something special – our Ben was a Patient…
“A Deeper Understanding of CCDS” – Sarah Young, PhD, FACMG
“A Deeper Understanding of CCDS” – Sarah Young, PhD, FACMG Did you know the Association for Creatine Deficiencies has an…
“Hook ‘em Horns” – Laura
“Hook ‘em Horns” – Laura I know those who attended the conference in Texas this summer will all agree that…
“Family Vacation” – Shelly
“Family Vacation” – Shelly We just had our first big family vacation. Overall it really was great, we had good…
“Newborn Screening Presentation” – Kim Tuminello & Nicola Longo, MD PhD
“Newborn Screening Presentation” – Kim Tuminello & Nicola Longo, MD PhD September is National Newborn Screening Awareness Month, and on…
“Life With CTD” – Chelsi
“Life With CTD” – Chelsi Hello, my name is Chelsi and I have CTD. 23 years have come and gone…
“Special Education” – Celeste
“Special Education” – Celeste Wow! I’m still processing all of the things I learned from the 2018 conference in Austin….
“The Feeding Tube Post” – Nathan
“The Feeding Tube Post” – Nathan Good day friends! For this blog, I thought I would write about something I…
“It’s so Austin…” – Shelly
“It’s so Austin…” – Shelly “It’s so Austin…” I heard that sentence a lot the weekend of July 27-29. I…
“Let It Be” – Amy
“Let It Be” – Amy As a mom of a child with a rare condition, particularly of my Ben who…