Undiagnosed and ultra-rare disease patients and their family members have joined efforts with clinicians and advocacy partners to create the Undiagnosed Diseases Network Foundation (UDNF) to help improve care for people with such rare diseases, such as aromatic L-amino acid decarboxylase (AADC) deficiency. “By centering those left behind…

Father’s Day has just passed in the United States, and I appreciate all the wishes and wonderful comments I receive each year. However, this year, I’ve been thinking about the power of grandmas — the family members who have the greatest experience of being a parent. In my case, the…

Several years ago, sleepless nights plagued my wife, Judy, and me. This in turn allowed the fog of confusion to seep into every aspect of our life as we searched for answers regarding the mysterious affliction of our daughter, Rylae-Ann. Everyday challenges were only compounded by the emergency room admissions…

The chat message came late in the evening just a couple of weeks before Christmas 2018. My wife, Judy, and I lay in bed staring at our phones, trying to figure out how we could help our daughter, Rylae-Ann. We didn’t even know what she had at the time and…

The taxi came to a halt in front of our house on Sunday morning. The windows were tinted, but I knew who was inside. Out she came, a thin Asian woman holding a sack of rice and a black trash bag full of clothes. This wasn’t how I’d imagined the…

My wife and I would not have accomplished as much as we have without our support network. These people have played a critical role in helping us manage our daughter Rylae-Ann’s aromatic l-amino acid decarboxylase (AADC) deficiency. I used to want to take the world on by myself. I would…

A good support network is important for maintaining your physical and psychological health. Positive support from friends, family, peers, and co-workers can make you more resilient when you experience stress, depression, or anxiety. Although specific studies about support networks in families affected by aromatic L-amino…