Search Results for: blog patient and family advocacy groups

Patient and Family Advocacy Groups

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When Maggie was just a few months old, I attended a cystic fibrosis education night put on by the local CF patient and family advisory group that I didn’t know existed until that night. Not only did I learn about CF and how our local CF clinic compares to others across the country, I found a way to turn the pain from Maggie’s diagnosis into a new purpose. That night, I signed up to join the group, and have been attending the monthly meetings for over a year. It was one of the best decisions I could have made. I … Continue reading →

Celebrate Your Child’s Care Team

With all there is to do this holiday season, don’t forget about those that make a real difference in your child’s life. We send holiday cards to everyone we know, but often times we overlook people who have made a real difference in our lives – our child’s special care team. No matter what the condition is that your child has, chances are there is a team of people who help you to take care of him. There are doctors, nurses, nutritionists, child life specialists, home care providers, social workers, and specialists who have offered you support and guidance while … Continue reading →

Are Asians Misdiagnosed with Fetal Alcohol Spectrum Disorder?

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My last seven blogs have told a very personal story, but it may not be as unique as I thought. The very next summer after our Two Months of Hell, a coworker at our church was in tears—her son and daughter, adopting from Korea, had received the referral and photos of a little boy the whole family had fallen in love with—then the doctor made dire predictions about fetal alcohol exposure. “We’re all just crying our eyes out,” the grandmother-to-be said. Later these concerns were proven unfounded. The child was adopted by this family and doing just fine. At least … Continue reading →