Special Events Stories & Photos

Colorado Run for PHun Celebrates Fourth Year
September 16, 2012

The 4th Annual Colorado Run for PHun took place Sept. 16, 2012. PHA spoke with two of the event organizers — Beth Coleman, RN, CPNP, and Deb McCollister, RN, BSN — about the event and its history.

Colorado Run for PHun participantsHow did the idea for the Colorado Run for PHun come about?

Our very first Colorado fundraiser was a gala held in 2008. Our two hospitals, Children’s Hospital Colorado and University of Colorado, had recently moved to one campus; it was a logical choice to work together toward a PH fundraiser since both our organizations are so involved with taking care of PH patients. We wanted it to be a joint effort between our hospitals and PHA, and this has really laid the foundation for how we’ve conducted all future Colorado fundraisers.

How did you decide on a run/walk?

Although the gala idea was our first foray into PH fundraising, we wanted to draw more patients and families into the event, as well as create more awareness in the broader community. We also wanted to showcase our new campus, so we decided to hold our next event, the run/walk, on the Anschutz Medical Campus.

Who helps you coordinate the event?

It started as a grassroots effort and has remained this way for the most part. Having the race on campus taught us that it is almost a full-time job to coordinate an event like this, working with all the campus personnel to nail down the logistics and all the details! So for our 2012 event, we decided to utilize a race coordinating company and hold the event in City Park in Denver. The company took on many of the finer race details that can really bog one down and enabled us to do our regular jobs of being nurses!

The registrants’ feedback was very positive about the new venue, and the race drew 470 registrants, a 20 percent increase over last year. After four events, we think we might finally have a pretty solid idea of how to move forward with our event without too much change from prior years. In terms of coordinating the event, the entire PH community comes together to make it a success, including nurses, physicians, patients, family members, volunteers and pharmaceutical representatives. It truly takes a village!

The sense of community your walk creates is evident from how much people look forward to it every year. What do you think contributes to that?

A key element in organizing the event is to include patients and support group leaders who can provide guidance and suggestions and who will tell others about the event. PHA has also helped us immensely in spreading the word. Additionally, each and every one of the patients we treat in Colorado receives a race brochure. It has really built on itself year after year. Also we try to infuse entertainment, fun and education into the day by holding a silent auction, a kids’ play area, and a brief educational session provided by our expert physicians. It’s not just about the race.

What is the most important part of the event for you?

While the tangible goals are clearly evident in funds raised for research and visibility to create awareness of this rare disease, the intangibles are what we take away each year — creating a venue for adults and children to connect with others affected by this difficult disease, to realize they are not alone, to bring hope in a shared fight for a cure and inspiration from all that our patients achieve despite their limitations.

What advice do you have for anyone thinking of hosting a special event?

Don’t try to do it as a “one-man show.” This will lead to exhaustion, and your event will not be sustainable over the long term. Enlist members of your community, medical center and PH support groups. Delegate and empower members of your event planning committee to take ownership of specific aspects of your event: advertising, registration, silent auction, food, giveaways, education and sponsorship — to name a few. Plan to secure your event venue a year out, and start your monthly planning meetings six months prior to the event. Sponsorship and advertising can be ongoing throughout the year as opportunities present themselves. The more years you successfully host an event, the easier it gets — truly!

The event organizers put together a slideshow this year to generate even more interest before the event. View the slideshow

 

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.