Recent News

• What I’m Into {July/August 2018 Edition}
  What I am watching I am a huge Trekkie as my friends know. I used to go to Star Trek conventions back in the early 90s! I am also, shall we say, an equal opportunity Trekkie. I like all Trek shows, movies, all the time, unlike my sweet hubby who is only a big fan of the original show. He’s watched the movies with me and a few of the Borg episodes of the Next Generation, but that’s about it.Read More →
  Sunday 12th of August 2018 11:39:14 AM
• My Take-away from the Debra’s Patient Care Conference 2018
  Going to the Debra.org PCC is always a treat. The first Conference I attended with Nicky was the one held in Los Angeles in 1999. It seems like forever ago. Nicky was 2.5 years old and by then I had many “online” friends which I had the absolute pleasure to meet in person. Back then, without Facebook or even MySpace, the only way to find someone who was dealing with the same rare disorder was through mailing lists or messageRead More →
  Thursday 9th of August 2018 01:22:44 PM
• Tomato Risotto
  As Italian as you can get, this was a dish my mom made all the time!!! I wish I could say you could use “any” rice to make this, but Arborio is the rice you should use for this dish. Thankfully you can now find this type of rice anywhere nowadays. Enjoy! —————————————————————- Ingredients: 2 tbsp butter 1/3 cup chopped onions 2 tsp minced garlic 4 cups chicken broth 1 cup arborio rice 1/4 cup grated Parmesan cheese 2 mediumRead More →
  Wednesday 1st of August 2018 11:40:34 AM
• 6 Things Everyone Should Know About Epidermolysis Bullosa
  My son Nicky was diagnosed with Epidermolysis Bullosa (EB) 12 hours after his birth, a month later we received the official diagnosis of “Recessive Dystrophic”. Here are my top 6 things to know about Epidermolysis Bullosa. 1. Epidermolysis Bullosa is a genetic skin disorder. Epidermolysis Bullosa it’s an umbrella term for a group of genetic skin blistering disorders. The condition arises from genetic mutations present at birth, which can be inherited either recessively or dominantly. Different mutations cause the differentRead More →
  Sunday 8th of July 2018 12:37:36 PM

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