Blog

04 May Especially Beautiful Fundraising Update

Virginia Kimonis, MD Especially Beautiful Fundraising Update April 2016 NUBPL is a “rare” mitochondrial disease. Research activities represent hope for the lovely Spooner girls and others with this rare condition. In fact, the field of clinical genetics represents a promising pathway to new and better treatments for...

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08 Mar I Found My Purpose!

OK, so I have to admit I have not read "A Purpose Driven Life" but I don’t have to read it to know how important it is to have a purpose driven life. We all look in different directions throughout our lives searching for...

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22 Oct I am scared …

There are certain times throughout our family's struggle with a rare disease that I am actually scared. Now is one of those times. I try so hard every day to stay positive and strong. I sometimes feel like I am about to break...

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21 Mar Do I dare to dream?

I wonder if it is better to set high expectations and maybe fail or to stay grounded and be pleasantly surprised? It has been about a month now that Cali and Ryann were diagnosed. So far we know that Rick and I share...

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