Introducing the Community Partner Committee

Did you know that Running for Rare has a Community Partner Committee?

Our main objective is to support healthy and safe community partnerships for the Running for Rare team. We develop strategies to grow the community and work to ensure the experience for community partners is meaningful. Running for Rare provides community partners a platform to share their story, connect with those going through similar challenges, and be part of a passionate team committed to raising awareness and support for the rare disease community.

Our committee members are:

Gina Di Sanzo, Chair
Anne Burtenshaw
Ed Johnson
Jen Melanson
Emma Rooney
Laurie Sperou

The committee coordinates via regular phone meetings and email. We may live in different places and have different backgrounds but we’re all passionate about the Running for Rare mission. We also know firsthand why the relationships between runners and the community partners are at the heart of this team.

Why we continue to take part:

“I have been a part of the Running for Rare team for the past four years,” shares committee Chair Gina. “I first became involved as a community partner; I was diagnosed Langerhans Cell Histiocytosis a little over four years ago. The partnerships that I’ve had and also just being a part of Running for Rare has been such a positive experience. I went from feeling so alone to feeling a part of a very unique community.”

For Laurie, who has also been connected for the last four years, “this community has enhanced the love and support we receive for our entire family and we want to pass that along and do the same for others! Running for Rare has become more than a community to us…we feel like part of a family.”

Anne explains her family’s on-going involvement, “Ed and I participate in the Community Partner Committee because we see real value in what we are accomplishing as an organization. Plus we have made some wonderful solid friendships along the way. 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 with Congenital Hyperinsulinism earlier in his life, we would not be dealing with many of the challenges he faces today.”

Why we think building partnerships is key:

Jen, who has been both a community partner and a runner with the team, feels that, Emma and Jen“this team is all about connections. Living with rare disease can be very isolating. The connections within the partnerships allow the community partners to have a voice, to tell their stories, to truly be heard. For a community partner, it can be extremely validating. And for the runner, it is hugely rewarding.”

For Emma it’s about being part of a global network, “I know what it’s like for me to live with type 1 Gaucher disease but before joining Running for Rare I had few opportunities to connect with others from the rare disease community. I’ve become not only an advocate for my own community but committed to learning from everyone involved and working as a team to support the rare community.”

For Anne and Ed, their son Christopher’s partnerships have all been different but all amazing. “We feel fortunate to have been able to stay in touch with them all and value those friendships immensely. Patrick Jones who ran Providence last year, and will be running Boston this year with a new partner made a big impact on the entire family. 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.”

Patrick and Christopher

Shauna and Phil

 

The partnerships made with Laurie’s daughter, Shauna, have also impacted the entire family. “While Shauna is educating, connecting and spending time with her runner, we are all building relationships and supporting each other. When someone wants to learn about you and your rare disease on such a personal level, it builds a relationship that is so remarkable in our hearts, it is almost impossible not to build that special connection,” says Laurie.

 

A tip for the partners out there:

“Building the partnership does not have to be complicated,” Jen reminds us. “Sometimes the simplest things make for the most meaningful exchanges. Simply sharing a funny meme through email, text, or social media, can be just the thing to strengthen and maintain connection.” Anne sums it up by saying, “the more you put into your Running for Rare partnership the more you’ll get out of it.”


The members of the Community Partner Committee would like to wish all the runners and partners taking part in tomorrow’s Marathon Monday and in Providence on May 7th a wonderful experience! We can’t wait to see your stories on the blog soon.

If you have suggestions or questions don’t hesitate to get in contract with us. You can email Gina Di Sanzo at gdisanzo [at] yahoo [dot] com. If you’re interested in becoming a Rare Community Partner or know someone who might be, find out more and apply on the team page.

Posted in Patient Stories
One comment on “Introducing the Community Partner Committee
  1. Anne Burtenshaw says:

    ❤️

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