Who is your Hero?

Do you remember being in school or a young child and someone asking you, "Who is your hero?"  A Hero is typically defined as a person who is admired or idealized for courage, outstanding achievements, or noble qualities.  Our family has encountered many people who have gone above and beyond in our eyes and be defined as courageous, who stands out in the crowd giving to others, and doing selfless acts to promote, advocate and help amazing causes in their communities.

This is one hero we are so thankful to also call our friend.  In 58 days, Phil Maderia and his Genzyme running team of 30 runners will be running in the Boston Marathon for rare diseases.  They are dedicated to making an impact on the lives of people fighting these incredible battles of diseases without treatment options or cures.

"Alone we are rare, together we are strong"

We are hopeful to be Boston bound to cheer on our hero who will be running in memory of Mylee and another dear little one (Wylder) who together are holding hands in heaven.

Please help support Phil's efforts at bringing awareness to raise diseases around the nation and world.  Each step he takes as he runs 26.2 miles is an effort on his part for this amazing cause.  Next week, on February 28th, the world will observe this day to raise awareness about rare diseases and improve access to treatments and medical representation for individuals with rare and genetic diseases and their families.


For Phil and his team and in memory of Mylee and Wylder and children like them who have fought or continue to fight rare diseases, please donate $26.20 on February 28th!  2014 Running for Rare Diseases Marathon Team.

Thank you Phil!  And thank you to your team of runners who together will run strong!  Our heroes, our friends!!

A Runner's Prayer

Run by my side, Lord - 

Live in my heartbeat. 

Give strength to my steps, 

As the cold whirls around me, 

As the wind pushes me, I know you surround me. 

As the sun warms me, 

As the rain cleanses me, I know you are touching me. 

Challenging me, loving me. 

- And so I give you this run.  

Thank you, God, 

for matching my stride. 

Amen