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Showing posts from July, 2010

You Run Like a Girl

Hello all, I haven't spoken about fundraising in the blog before because I felt it was more important to focus on our life experiences since the girls' diagnosis. However, a unique opportunity has presented itself from some very special people and I wanted to share it with you. My nephews and nieces in San Diego are training to run a half marathon on August 15th. All funds will go directly to the AMDA, which is a great organization supporting the Pompe community. Please see my niece Meghan's letter below. If you are able to donate, please consider employer matching funds as a way to boost the impact of your donation. Either way, please keep them in your thoughts and continue to check the blog for updates on their success. Thank you. All for two and two for all! Matt ------------------------------- Dear Family and Friends, As most of you know, our two cousins have been diagnosed with Pompe Disease. Maddie and Emma are truly amazing individuals who live each day with j

When I'm Sixty Four

When I get older losing my hair, Many years from now, Will you still be sending me a valentine Birthday greetings bottle of wine? If I'd been out till quarter to three, Would you lock the door, Will you still need me, will you still feed me, When I'm sixty-four? Their names were B, Z, D, and E.  I don't recall their real names or if they were my great aunts, third cousin's sisters, or mother's brother's cousin's sisters.  Nor do I remember if they were widows or "old maids" like they used to say.  To a little guy, these details did not matter.  What I do remember is that they were kind and always had stories to tell. On occassion, my mom would take my brothers and I on the 30 minute drive down Rosecrans and over to Long Beach Blvd. for the type of visit that doesn't happen so much anymore.  You see, these were the days before iPhones, video games, email, Facebook, and - gasp - blogs!  This was when cartoons were only on Saturday mor

Help from The Gators

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Help, I need somebody, Help, not just anybody, Help, you know I need someone, Help! When I was younger, so much younger than today, I never needed anybody's help in any way. But now these days are gone, I'm not so self assured, Now I find I've changed my mind and opened up the doors. Help me if you can, I'm feeling down And I do appreciate you being round. Help me, get my feet back on the ground, Won't you please, please help me? I've held this song in the background waiting for the right post because it carries a special message. It speaks of the realization of vulnerability and the willingness to open oneself for help. When you realize "my life has changed in oh so many ways", it's OK to "know that I just need you like, I've never done before." Thankfully for our family, many angels are here to help. This is the story of one great group of people. Last week we met with Dr. Barry Byrne and his research team at University of Flor

July's Forecast...Reduced Snowflakes

The night before we moved from our Northern California home a friend who learned we were moving to the Northeast asked me a question.  "Do you know it snows there, even when you don't want it to?"  I laughed it off speaking instead about the beauty of the Northeast, my new job opportunity, and of course the cheesesteaks.  While I thought it was a humorous question at the time, I must admit I repeat it each winter as I gear up to clear the snow from the driveway.  Seven years after living on the east coast I've realized I have two favorite parts of a winter storm.  The first is watching a heavy snowfall where the snowflakes are so large and distinct you can reach out and touch the magic of winter.  The second is when that last bit of snow is washed away by a gentle spring storm clearing the way for warm, sunny days.  Sure there's all that other "stuff" in winter that's cool too, but when it comes to cold weather that's where I stand. So why ar