CHI x 2, Wally, Winning The Lottery Again, A 4th Son and The Pinnie

Our recent Providence Running For Rare weekend evoked many emotions, but we think happiness and gratitude top them all. We are so happy to have had the opportunity to be part of this amazing group, and we are grateful for all Patrick Jones accomplished to get there and share the experience with us. It was a really wonderful time with our Running for Rare family. We always have fun together and it’s great to have fun and do something to make our ‘RARE’ world a better place, as a team we are absolutely doing that.

Congenital Hyperinsulinism x 2

It was so nice to be able to share the Running For Rare experience with another Congenital Hyperinsulinism family this year. Karen Castellano and her daughter Amelia came up from NJ for the Providence weekend activities, Amelia partnered with Phillip Maderia. CHI was very well represented cheering our runners on at India Point Park. Amelia is adorable and Karen is an amazing Mum. It was nice to spend a little time with Karen and share our experiences. The weekend seemed to fly by, we would have liked to spend more time together, but we are looking forward to seeing more of Karen and Amelia when they come to Boston over the summer.




Wally, the Red Sox mascot, played a starring role this year. Here he is out on his last long 19 mile run with Patrick.


He was a real trooper through all the training and was very busy socially. He popped up at the charity run, pre marathon dinner, Boston Marathon and the Providence Marathon. He even co-piloted down to Providence with Patrick. Wally was a great way for Chris and Patrick to connect.


Winning The Lottery Again

This is our fourth year with the team. We’ve had four different experiences and all of them have felt like winning the lottery. We have been really blessed in having GREAT partners. This year Patrick joined our marathon hall of famers along with our previous partners Jen Tedstone, Pat O’Sullivan and Melissa Halstead.  The real value of these connections is that we continue to have meaningful friendships with our running partners and feel so fortunate to have them in our lives.

A 4th Son

Patrick has achieved rock star status with all the Johnson boys and unofficially has been claimed as a 4th son. We couldn’t ask for a better role model for all three of our boys. Patrick had to work at developing his relationship with Chris, at times not easy trying to interact with an 11-year-old who is more introverted than extroverted. Patrick made this experience special for Chris.  He not only ran the marathon physically, but also emotionally connected with Christopher, he made a big impact.


The Pinnie

We could not have been prouder of our 13-year-old son Tom this year when he participated in the 5K run wearing the official team pinnie. It was just another 5K for Tom until he donned THE PINNIE and then a transformation took place. He was beaming with pride; you can see him in the team pictures. As parents it makes us really proud to think that going forward Tom may be able to participate more in the team efforts and continue to be inspired by this community. Watch out, he may be looking for a community partner next year.


Picture6 Picture7Running for Rare is making a positive impact on the lives of so many, perhaps even more so when considering the struggles many have endured and continue to endure. Personally we realize the value of our interactions within the team, and also the potential life changing impact our fundraising efforts are making within the Undiagnosed Disease Network. If our son Christopher had been diagnosed earlier in his life, we would not be dealing with many of the challenges he faces today.

We want to extend a huge heart felt thank you to the runners, partners and all their families who make this experience so wonderful for all of us. This year we have grown in number and have continued to build a strong team dynamic with our runners and community partners. We are continuing to add races which will bring more community partners who will benefit from this amazing experience. We feel so proud to be part of all Running For Rare has accomplished and will continue to accomplish as we move forward with our National Organization of Rare Disorders partnership.

May 01 2016 - Providence Marathon - 127

We are definitely happy and very grateful.

Anne & Ed

Posted in Patient Stories
3 comments on “CHI x 2, Wally, Winning The Lottery Again, A 4th Son and The Pinnie
  1. Dena says:

    Brilliantly written and so beautiful to read and feel the love behind it all.

  2. Erica says:

    Glad to be partnered as well and so glad to know families likes yours Anne and Ed!
    Truly a fun time and sometime I really looked fwd to during a difficult spring in relation to my own dx, on-going issues and Provider losses.
    Aline we are Rare, Together we are STRONG!

  3. Tara Woodbury says:

    This makes me so excited to have just signed my daughter up to join the team. What a remarkable experience!

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