“Share Your Rare” – Regina
“Share Your Rare” – Regina I had the recent pleasure of attending an event hosted by the Oklahoma Rare Action…
“Jacob” – Lacy
“Jacob” – Lacy A phrase I hear quite often is, “I don’t know how you do it.” I don’t always…
“IRONMAN Lake Placid Recap” – Jerry
“IRONMAN Lake Placid Recap” – Jerry My fourth Ironman is in the books. Lake Placid, New York is a beautiful place…
“WHO’S GOING TO PROTECT HIM WHEN I’M GONE?” – Nancy
“WHO’S GOING TO PROTECT HIM WHEN I’M GONE?” – Nancy Over-protective. Controlling. Helicopter Mom. Whatever you call it, that’s who…
“Obtain, Maintain, Sustain” – Regina
“Obtain, Maintain, Sustain” – Regina Immediately following Caiden’s birth, we knew he was facing many struggles. We had a lot…
“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…
“Getting Better” – Amy
“Getting Better” – Amy Ben’s recent Creatine Transporter Deficiency (CTD) diagnosis has hit me hard emotionally, so I thought that…
“What About Me?” – Kelly
“What About Me?” – Kelly I’ve made no secret that our family life is somewhat different from the norm. Our…
“The More Things Change…” – Nathan
“The More Things Change…” – Nathan Greetings friends! Well, it is that time again as I am once more honored…
“Saying ‘I Love You'” – Beth
“Saying ‘I Love You’” – Beth It wasn’t until this school year, Benny’s 7th grade year, that we realized he…