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Archive for the ‘umdf’ Category

As I sit in my room at MGH for the 7th day now – with no end in sight – I had begun to forget that Christmas was just around the corner. I got about halfway through decorating our tree before I went inpatient and I’m not sure if I’ll even get the chance to finish before the holiday is upon us.

Luckily, Keith and I have decided to continue with our trend in recent years and scale the holidays back this year. We’re certainly not scaling back the holiday cheer – oh, no! But we try to walk a different path when it comes to the consumer aspects.

Each year, we hem and haw, stress and spend. And what’s the result? We give our loved ones things. Gift cards that get lost. Trinkets that gather dust. Games that are played for a few months, then forgotten.

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Last weekend, I helped put on a patient education meeting for the mito community. The meeting was incredibly productive and I am so incredibly grateful and blessed to have had some amazing friends to help us put it together. In preparation for the meeting, I put together a montage video with a song on my good friend Stefani Bush’s upcoming album, Hope Rising. Hope Rising will be released in November. If you’d like to order a copy, let me know!

The majority of the pictures were given to me over a the last few months to support the efforts of UMDF; others were taken at UMDF-sponsored events. I’m very grateful to all of those who shared with us. We hope the video inspires people to not live only to become victims of the disease. Rather, we hope you’ll join us in our efforts and on our journey. Because you, too, can be part of the cure. For more, please visit umdf.org.

PS I forgot to add one of my pictures on my last blog. Take a look!

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First, my apologies for the huge gap between updates. Last week was, well, “one of those weeks.” Between work, sleep, and the multitude of birthdays, I nearly forgot to breathe and did forget to regulate my temperature.

Let’s start out with the birthdays! I want to wish a HUGE happy birthday to my friends and family:
My Daddy (August 15)
Cousin Lindsay (August 16)
Former Roomie Dorothy (August 16)
My Mama (August 18)
My “niece” Sasha (August 20)
My Uncle Mark (August 20)
My Gammy (August 21)
My other “niece” Alexis (August 21)

You guys make my world and I’m so blessed that you’ve been in my life for another year. I wish I could have been closer to all of you to help you celebrate your special days. Unfortunately, the birthday honorees live in five different states from Massachusetts to Texas to California so it was, alas, impossible. I do hope you all celebrated in the style worthy of your awesomeness.

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