He is at it again, this time with a few friends

I spoke to Phil the other day.  The most awesome of awesome Phil who not only  ran the Boston Marathon this year in honor of Wylder, but has become a wonderful friend to us and believes in all things Wylder. 



Not just anyone can pull off a boston cap and pumkin belly :)

Not just anyone can pull off a boston cap and pumkin belly :)

As many of you know from following this blog Phil had a serious and scary running injury during his last race for Wylder, and first 100 mile marathon.  After months of rest and intense physical therapy he is somehow already at it again, running, running, running.  For the first time he found himself overcoming adversity, due to injury …  getting back in the game through commitment and focus, much like all our Niemann Pick families to do on a daily basis.  During one of his last training sessions, something magical happened.  He not only found himself turning to Wylder for energy and support he found himself thinking of Wylder’s friends; Trek, Quinn, Jacob, Kaitlyn, Riley, Faith, Lily and Amber.  He felt they were all with him that day.  All these beautiful kids who have pasted in the last year and a half from Niemann Pick A, and who Phil felt a connection with through this blog, arrived to help him that day.  Phil’s “test” training run quickly turned into pain free, energy filled, 80 mile run.  WOW.  He felt the power of all of those little ones. 

 Turning back to his own motto in life and in his Running for Rare Disease efforts is “Alone we are Rare, together we are Strong”, Phil came up with an idea.  A beautiful, wonderful, magical and perfect idea.  Phil will now not only run with Wylder on the forefront of his mind and prayers …. He will now run for Trek, Jacob, Kaitlyn, Quinn, Riley, Faith, Lily and Amber.  This is our community and together we ARE strong and our kids are simply amazing.



 After this amazing training session and ‘ah-ha’ moment Phil had …. he has now registered himself for another 100 mile run … and it’s THIS Saturday!  I seriously cannot wrap my mind around a 100 mile run, but with the strength of all of these children, I know he will do so well.   It’s the Ghost Train 100 mile run in Milford, NH.  It will certainly be the hardest run to date in Phil’s life, and he is putting his faith in us as a team to help him through that day. 


 If that isn’t enough Phil is putting on a mini-fundraiser  for this marathon looking for virtual runners.  All of the proceeds are going to go to Wylder Nation Foundation (now that we are officially a 501C3, yeah!).  More details on that coming soon, I promise.  You can see all the details at Phil’s link below. 


Here is how to donate to support Phil through specific Miles (5 mile incriments)  http://auction.jellyrules.com/

 This also being Niemann Pick awareness month, makes this all the more special in terms of timing of this run and teaming up . 

 Phil is quite simply at is again, spreading his wonderfulness around and tackling a difficult metal and physical task now for our Niemann Pick COMMUNITY.  Please keep Phil in the forefront of your thoughts and prayers on Saturday as he takes off for the first time for 9 beautiful loves.  Happy running Phil!  You are also able to send Phil support tweets on the day of the run that his running team will read out to him at @running4raredisease

 Wylder, you know what to do … fly with Phil and your friends.  Keep him save and strong.  Thank you for showing Phil you are with him Wylder and for continuing to bring our Niemann Pick families together.  We love and miss you and will see you in our dreams.  xoxo




  1. God Bless You, Phil!!! One Human Angel sharing the legacy of a Lil Human Angel. Thank you, Phil! Prayers and love are with you!

    • Mommy and Daddy says:

      He is a Human Angel Leslie, and he feel so touched by all of our families. It has been an absolutely beautiful thing. Thank you for the prayers!! xoxo

  2. Eliza Iozzo says:

    Wow, what an amazing story!

  3. Cathy Johnson says:

    Uh-mazing!!!!! Phil, I just know that you will be carried on the breeze of those angel wings, which although tiny are mighty! Thanks for giving us the opportunity to support Phil in this endeavor, Shannon! xoxoxo

  4. thank you so much Phil!! you are amazing:) xoxo ,Chelsea

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