“Life With CTD” – Chelsi Hello, my name is Chelsi and I have CTD. 23 years have come and gone before I even knew about this condition. If it wasn’t […]
“Three Lessons from the First ACD Patient and Family Symposium” – Laura On a balmy night in late July we flew into Austin for the first Cerebral Creatine Deficiencies Syndrome […]
“Special Education” – Celeste Wow! I’m still processing all of the things I learned from the 2018 conference in Austin. The CCDS Symposium was incredible! For me, the information was […]
“The Feeding Tube Post” – Nathan Good day friends! For this blog, I thought I would write about something I have been asked about several times, the feeding tube. It […]
“It’s so Austin…” – Shelly “It’s so Austin…” I heard that sentence a lot the weekend of July 27-29. I inferred it to mean several different things- odd, wacky, unique. […]
“Enriching Her Life With Therapies” – Randi Since Sonnet wasn’t diagnosed with GAMT until she was seven-years-old, she is severely affected developmentally in every way. We found that with treatment […]
“Let It Be” – Amy As a mom of a child with a rare condition, particularly of my Ben who has Creatine Transporter Deficiency (CTD), it’s so easy to let […]
“That Friend” – Shelly I feel like all us parents of special need kiddos have that one person who is our main go-to. Who we all wonder why the heck […]
“Summer!” – Laura Summer is the most coveted time of the year around our house… AND IT’S HERE!!! Both boys have birthdays in the summer, the weather is perfect for […]
“Realignment” – Nathan Good day again readers! I hope everyone has been enjoying the warmer days and (hopefully) sunny weather. If you caught my last post, I discussed the expectations […]