Friday, April 11, 2014

"Alone we are rare, together we are strong" - Boston Strong!!

In 10 days, thousands of runners from all over the world will come together in one of the most famous cities in North America to run in the Boston Marathon.  This year, people from around the world have been encouraged to participate in their own home towns, because as we come together and form a unity of peace - the embrace is forever strong!  For the past 8 years, an amazing friend has been running in the Boston Marathon.  Phil Maderia's amazing strength and determination will carry him through each mile as he runs to raise money for rare diseases and in memory of our Mylee Grace and Wylder James.

We are honored by this amazing opportunity as he continues to share Mylee's story to raise awareness for Mitochondrial disease and other rare disorders through his efforts as a marathoner, ultra marathoner, and Ironman triathlete passionate for rare disease awareness!  Phil is the director of engineering at Genzyme and the founder of RunningForRareDiseases.  This year, he has put a team of 30 athletes, representing 21 rare diseases together to run in the Boston Marathon.  Together they form an amazing team raising money and awareness for this very special program!

Please help Phil and his team as they carry with them the amazing spirits and strengths from patients they will represent at the Boston Marathon.  Here is Phil's fundraising page for general donations:

Check out this year's Silent Auction items:

Phil also has a music playlist fundraiser, send him your favorite song and he will add it to his playlist as he runs the course!

Your support is greatly appreciated and to know our princess lives on in so many people is an amazing feeling.  With brave wings she flies... Thank you Phil for honoring our princess and our friend Wylder.  Just as you carry them both in your heart today and on race day -- you will forever be our champion who wins the race!

                 Forever Mylee's mommy ♥