Today Raquel is getting braces. It wasn’t the fear of her coming out with braces that heightened my anxiety, but it was the process. She was going to Demko Orthodontics, and they are wonderful. However, I was acutely aware of the fact that they probably have never had a patient like Raquel with some of […]
It’s been almost a year now since my 7 year-old son Victor was diagnosed with Wolfram Syndrome. I still remember the day we found out, we got the diagnosis and then were basically sent home. Our doctor said all he could do is to try to treat the symptoms but not the cause because there […]
Judgment Day No longer were the days of scheduled naps, gold stars, and lollipop rewards. For Raquel, no longer were the days of naive young children with innocent ignorance, but now the transition to very aware adolescents with a far too critical eye. I should have been excited at the idea of Raquel progressing in […]
Wolfram syndrome is a rare genetic spectrum disorder characterized by insulin-dependent diabetes mellitus, optic nerve atrophy, and progressive neurodegeneration, and ranges from mild to severe clinical symptoms. There is currently no treatment to delay, halt, or reverse the progression of Wolfram syndrome, raising the urgency for innovative therapeutics for this disease. Here, we summarize our vision for developing novel treatment strategies and achieving a cure for Wolfram-syndrome-spectrum disorder.
Opening the doors The drive was mostly quiet except for my pounding heart beat. I looked over at Raquel in the passenger seat as she twiddled her thumbs. I felt like I could break at any moment, the nerves were getting to me. I wondered how Raquel felt? Was she ready? I sure wasn’t. Today […]
Caitlin Fess is a beautiful young lady who has Wolfram syndrome and isn’t afraid to talk about her disease and spread awareness. The Snow Foundation wants to thank Caitlin’s mother Dena, her father Brad, and the rest of the Fess Family for putting together the Elimination Dinner Event. They raised over $6,000 at the event […]
I received a great email today from a mother who teaches 4th grade PSR (Parish School of Religion) at our church St. Clare of Assisi. She told me that at the end of their Monday night class, they around the room and each child will pray for someone or something important to them. She said one little […]
I have always had great intuition (good or bad), ask my friends and family! The Snow Foundation has hired a new President and CEO, Dr. Saad Naseer, who is driven and ready to make our dreams become reality. The foundation is finally receiving the full time attention and direction it deserves, which means Wolfram syndrome […]
You must be logged in to post a comment.