WANTED: Passionate Patient Partners!

The Running for Rare Diseases Team is seeking passionate community members to join our 2014 Boston Marathon Team as patient partners!

Patient Partner Testimony:

For those of you who don’t know me, my name is Kristin.

image I’m an avid runner and also a patient living with a rare disorder called Homocystinuria (HCU).  This will be my 3rd year participating with the RFRD Team, and I want to share with you my experience as a patient partner.

In the spring of 2011, I attended the first ever HCU conference.  Growing up, I had never met another person with my rare disorder, and attending the conference was an eye-opening experience.  I realized how fortunate I am to have been diagnosed and treated for HCU at such an early age.  I was overcome with emotion listening to everyone’s stories, and came away from the experience with a desire to do something to impact the HCU community and others living with rare diseases.

Fast forward to the fall of 2011, I discovered the RFRD Team, and they offered me an opportunity to join the team as a patient partner.  In my first year with the team,  I wrote a blog on the RFRD website, created a fundraising page for NORD, and started spreading the word to my family, friends & the HCU community.  The response was overwhelming support and encouragement.  I was touched to hear from people all over the globe.  I received emails from parents of children with HCU in Canada, Australia, England, Ireland, Brazil, and the US.  People whom I’ve never met, donated to NORD in my honor, and I personally raised over $2500 in less than a month.  People just came out of the woodwork.  They wanted to learn more about HCU, and they wanted to help me in any way to achieve my goals.  For the first time, I had a platform to raise awareness for my rare disorder, and for that, I am forever grateful for the RFRD team!

Last year, I had the opportunity to participate with the team as a runner, and I took on a patient partner of my own, a 7 year old boy named Will.

image It was great to be able to be able to share his story, to further spread awareness for HCU, and to connect on a personal level with another HCU family.  Together, we were able to raise over $5000 for NORD.

This year, I’m raising the bar even higher.  I’m looking forward to teaming up with Will’s family again, and perhaps another HCU family.  I hope to get the HCU community even more involved with the RFRD team.  I’ve already started fundraising and spreading the word.  I’ll be writing a regular blog while I train for the marathon.  Here’s the link if you’d like to follow my progress: http://therarerunner.blogspot.com/.

The Patient Partner Program:

The patient partner program pairs individuals/families that are battling rare diseases with runners who have committed to completing the Boston Marathon in their honor. As a patient partner – you will play an instrumental role as part of our team.  Once you are paired with your runner,  you will exchange photos & stories, and begin developing a personal relationship.  You and your runner can stay in touch as often as you’d like.  While training for the marathon, your runner will also be fundraising for the National Organization of Rare Disorders.  You’ll have the opportunity to join them in their fundraising efforts and to help make a difference in the greater rare disease community.  We encourage you to also utilize our blog to share your rare disease story and increase awareness.  The months leading up to and the weekend before the race, there will be planned events where you’ll be able to connect with the runners, other patient partners and their families.  On Marathon Monday, the patient partners and their families will join other RFRD supporters to root for the team in the cheering section on mile 14 of the marathon course. image The patient partner program is an excellent opportunity to utilize the RFRD platform to further your own cause.  We recognize the significance of “Alone we are rare, together we are strong”.  The RFRD team is looking for partners who want to work together growing our community by using our platform to increase theirs.  For all who participate, this is a wonderful chance to experience one of the most famous marathons in the world and raise awareness for rare diseases at the same time!

If you’re interested in the patient partner program, please leave a message in the comment section below, and we will be in touch.

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5 comments on “WANTED: Passionate Patient Partners!
  1. Matt Crowley says:

    I have 2 daughters who have Pompe disease. I have thought about running a marathon for years. I am interested in running in honor of them or would be willing to run for another Pompe patient as well.
    Thank you

  2. Holly Feeser says:

    My 7 year old son has PKU. He enjoys all sorts of sports. Please feel free to contact us if any runners are interested in PKU. Thank you.

  3. Emma Rooney says:

    What a neat opportunity. I remember being really inspired by the story you shared before Kristin.
    I’m not sure if I’d be able to get myself to Boston from Europe but would love to partner up to keep raising awareness of living well in spite of Gaucher. I know already that amazing things can happen in this running community, even virtually!

  4. Anne Burtenshaw & Ed Johnson says:

    Our son Christopher was a patient partner last year. It was an amazing experience, we will never forget.We have so much admiration and respect for all the runners and the people they run for. We have made friends who will always be very special to us.

  5. Shane James says:

    It’s an amazing experience! Here’s the story from my guide runner: http://www.run-to-live.com/blog.html

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