Tag Archive for: run for resilience

Support the Run for Resilience Ostomy 5k at Events from Coast to Coast or with your own Virtual Run/Walk.

By Ed Pfueller, UOAA

Ostomate and two-time Durham Run for Resilience winner Collin Jarvis.

It was a hit from the start. Five years ago two ostomy nurses in Durham, North Carolina, Lara Leininger and Angela Richardson, had the belief that the ostomy community deserved its own awareness run and walk. “We wanted to educate the community about ostomy surgery and how persons living with an ostomy can achieve anything,” Lara says. “We want to encourage ostomates to be active and be proud of their resilience.”

Runners have done that and more at the Run for Resilience Ostomy 5k. Collin Jarvis lives with an ostomy and has won the Durham run two years in a row. Preconceived notions someone may have had about living with a “colostomy bag” are likely shattered when you’re left in the dust by a runner with an ostomy pouch.

Events always coincide with annual Ostomy Awareness Day or World Ostomy Day (which is held every three years) on the first Saturday in October. “This is our 5th year doing this race and we have brought a great deal of positive ostomy awareness to our local community and now nine communities nationwide.” The event also raises much-needed funds for UOAA to continue to support, raise awareness, advocate and provide educational programs for the ostomy community.”

Ostomy 5k co-founders Angela Richardson and Lara Leininger at the Durham, NC event.

Community members, families pushing strollers, and serious runners join in the fun every year on the scenic routes all over America. In North Carolina nurses and hospital employees also compete against themselves in a fundraising challenge, the victor taking home bragging rights and a golden toilet trophy.

“It’s awesome to see an ostomate finish first, but the run is also about all those who have come back from this lifesaving surgery and have struggled in life with an ostomy. You are all resilient just by your everyday accomplishments,” says UOAA President Susan Burns. Several people have walked at least part of the course just months after surgery, while for others it provides inspiration to set a goal, overcome fears, and run/walk this distance for the very first time.

“A majority of the public does not know what an ostomy is and if they do, most have a negative connection with ostomy surgery. There are a lot of myths that we try to bust. Those living with an ostomy live active lives, can be young, middle-aged, old, healthy, confident, etc. Ostomy surgery saves lives and a lot of times improves a person’s life!” Lara says. These 5k events are a visible declaration to communities that ostomates are here and deserve support. Stigmas melt away when people attend these events.

What was once was a North Carolina local event has known spread to nine locations nationwide. You can also attend or support 5ks in Portland, Oregon, Birmingham, Alabama, Nashville, Tennessee, Boise, Idaho, Harrison Township, Michigan, Pennsauken, New Jersey, Mesa, Arizona and East Stroudsburg, Pennsylvania.

Luckily you don’t need to be near an event to participate or support it. With the Virtual Ostomy 5k anyone can run or walk in their favorite neighborhood spot, or even on a treadmill. You can gather friends and form a team. We’ll even mail you out a free official bib number and a race tech t-shirt ($15) to join this worldwide event that takes place on World Ostomy Day, Saturday, Oct. 6, 2018. You can donate to runners or events near you, or on a national level.

The Arizona Ostomy 5k Fun Run/Walk will feature a picnic and games this year for World Ostomy Day.

This year’s World Ostomy Day theme is “Speaking Out Changes Lives” and the Run for Resilience is the official U.S. event during this worldwide celebration. All runs will take place that morning with the exception of Boise, Idaho on Saturday, October 13.

“UOAA makes an ostomy patient feel like they are part of a community and that they are not alone. They direct patients to support groups, answer questions, provide education, and allow them as a patient to give back by being a part of the UOAA. It’s best resource for anyone with an ostomy.” Says Michelle Pitylak who is organizing a first-year event on the shores of Lake St. Clair.

Also new this year is a 5k in the Pocono Mountains region of Pennsylvania and the Tennessee run is moving to the “Music City” in Nashville. Both events are timed and certified 5ks and organized by dedicated ostomy nurses. Nashville Fashion Design icon and ostomate, Manny Cuevas, is helping to make the event in Two Rivers Park one to remember.

Another first year of event will be a homecoming of sorts. United Ostomy Associations of America (UOAA) was founded in Southern New Jersey in 2005 and this year a timed 5k run/walk will be held in Cooper River Park in Pennsauken, NJ that has views of the skyline of neighboring Philadelphia.

The second oldest event is the Portland, Oregon Fun Run which returns for its fourth year. Runner and ostomate Lianne Weller is excited for this year’s run in the Milwaukie River Park. “I think the ostomy race is a great way to bring individuals, their family and friends together in a carefree activity. The 5k race also allows other ostomates to build confidence and breakdown barriers to getting back into physical shape; going one step closer to their goal. One particular aspect I look forward to when it comes to races like this, is being able to not let my ostomy be a barrier to meeting new people. I feel more confident and less self-conscious because I’m surrounded by individuals who have all gone through similar obstacles.”

The Central Alabama WOC Nurses’ Association is proud to bring the Ostomy 5k fun run to Alabama for the third time. Also returning is the successful Fun Run in Mesa, Arizona. Organizer and double ostomate Roxanne Camp is planning a great time at her picnic and 5k in Red Mountain Park. “Ostomies save lives they don’t take them,” is her personal motto.

Now in its third year the certified time 5k run in Boise, Idaho is a true community event. The driving force behind it is Megan Herrett, a mother of two children with an ostomy who wants to see her community be more accepting and educated about people living with an ostomy. If you attend prepare to be inspired by the young people running in support of their friends at this event. Attending or donating to any one of these events provides a public voice for the ostomy community nationwide, and funds raised ensure that the next person who has this life-saving surgery will get the support and information they need.

All runs are family-friendly and will feature sponsor tables and run bags. Several include a silent auction, giveaways, kids run, music, food and more. Check for information about an event near you on Facebook or www.ostomy5k.org, and Run, Walk, Volunteer, Cheer and Fundraise to support the ostomy community and UOAA!

Run for Resilience Ostomy 5k Expands its Reach

By Ed Pfueller, UOAA

The cause of ostomy awareness was visible on streets and trails all over the country for two Saturdays last October. People embracing life again after ostomy surgery, people still struggling with recent hospital stays, nurses, family, friends, returning participants, and local runners, were all represented. Supporters cheered as 616 people ran, walked or rolled in this year’s Run for Resilience Ostomy 5k. On Oct. 7th (Ostomy Awareness Day) and 14th, communities in Alabama, Arizona, Oregon, North Carolina, Pennsylvania, Idaho, and Tennessee celebrated the resilience of people living with an ostomy or continent diversion by raising ostomy awareness. Another 139 runners nationwide opted to run/walk “virtually” in their own communities.

The Boise Run for Resilience Ostomy 5k is a family friendly event raising ostomy awareness. Photo by: Natalie Koziuk Photography (www.nkoziukphotography.com)

Passionate local organizers, over 50 volunteers, and local and national sponsors made this year’s events possible. UOAA provided logistical support and the proceeds the non-profit organization’s national education, advocacy and support programs.

Event locations expanded again last year adding venues in Mesa/Phoenix Arizona and Cookeville, Tennessee. Located about an hour east of Nashville the Tennessee event took place on the historic streets of the Downtown, Cookeville. Runners trotted under magnolia trees and along the historic main street of town before heading to the finish. Water was handed to them by representatives from Hollister, the Platinum sponsor for the year’s events who also hosted games of corn hole outside their sponsor tent. Nashville fashion designer Manny Cuevas, known for dressing some of the biggest stars in the music industry, was inspired to run due to his own personal journey with an ostomy. He was cheered on by family and friends and accompanied on the course by a daughter. Local organizer Deborah Nelson felt particularly blessed to have Manny there because of his resilience in light of medical setbacks, and also his advocacy. “He went to the state of Tennessee to get a proclamation enacted for the state to adopt this ostomy awareness day. Not only is he an advocate for nurses and other ostomates, but he is an awesome representative,” she said while awarding him the medal in the ostomate category of the run/walk.

Manny Cuevas after the Cookeville, TN Run for Resilience Ostomy 5k

In Arizona, the first-year event had a festive atmosphere. A picnic and music inside a ramada shelter welcomed competitors returning from a stroll along the lakes in Mesa’s Red Mountain Park. Local organizer Roxanne Camp who is a double ostomate was all smiles at the event despite being discharged from the hospital just a few days earlier. Her resilience is a testament to what the Run for Resilience Ostomy 5k is really all about.

The largest event this year was again the founding 5k in Durham, North Carolina. Though the majority of the 164 runners did not have an ostomy, ostomate Collin Jarvis repeated as the overall winner. First-time participant Molly Atwater was easy to spot as she was supported by family wearing “Molly Olly Ostomy” t-shirts. “As a brand-new ostomate, the Run for Resilience was a mountaintop experience for me. To attend an event where I was surrounded by people who knew what an ostomy was – either having an ostomy themselves, supporting a loved one with an ostomy, or working as an ostomy nurse – reminded me that I belong to such a strong and supportive community. I talked with many people over the course of the run and shared my experience in my short three months as an ostomate, learning tips and tricks for dealing with daily struggles. The coolest part of the entire event was looking around and not knowing who had an ostomy and who didn’t. And with it being a 5K, that drove home the idea that there is nothing an ostomate can’t do. I walked the race this year, but I am determined to run the whole thing next year. It’s an event that I would never miss in the future.”

The event drew runners from hundreds of miles away and again took place on the scenic American Tobacco trail and featured a popular silent auction and sponsor tents. The always popular stroller division again made this truly a family affair.

A family atmosphere was also central to the 2nd annual Ostomy 5k in Boise, Idaho. Despite frigid temperatures, 151 runners suited up for the event. Children could be seen tossing golden leaves into the air as runners passed by. They got their own chance to run in a 1-mile kids fun run.
Runners in Portland, Oregon also braved the cold to run along the Milwaukie Riverfront Park in what was the third year for the event. The event also returned to Birmingham, Alabama where the weather was much more pleasant. The Birmingham Area WOC Nurses’ Association again generously agreed to host the event. This year it was moved George Ward Park in Birmingham.

You did not have to go to any of these locations to take part in a run however. Our virtual run simply means you can walk/run in any location of your choice. You can gather with a support group, friends or family. Participants walked/ran in locations from the mountains of Colorado to the shores of Nova Scotia, or even on their own treadmill. Each participant got their own race bib number and t-shirt to recognize the awareness day.

Some virtual gatherings took on a life of their own. In Stroudsburg, Pennsylvania the mayor came out to cut a ribbon and walk at an event that attracted over 50 people. Enthusiasm for the walk was generated by organizer and ostomy nurse Gina Day had recently started the first UOAA support group in the area. “The outreach I received was priceless. I met some amazing people along the way, and appreciate all the donations I received to help bring awareness to the forefront! I realized how many lives I touched, when they all showed up and walked right next to me. I can not thank UOAA enough for their guidance and support to make this event possible for our ostomates in the Pocono region!  I look forward to next year where I can provide an official 5k walk/run for ostomy awareness in our community.”

“The local organizers really are the heart and soul of what makes this event so special, and I can’t thank them enough,” says UOAA Executive Director Christine Ryan. “Our dedicated sponsors enable us to bring the ostomy awareness event to communities across the country.”

UOAA hopes to see the Ostomy 5k grow even bigger and reach more people in 2018 when the event will coincide with World Ostomy Day on Saturday, October 6th. Tentative run/walks will be held in Nashville, Southern New Jersey and Harrison Twp. Michigan . Visit www.ostomy5k.org  or follow us on Facebook for the latest 2018 event information. To be a national or local sponsor, start a fundraiser, or inquire about organizing an event in your community, contact Christine Ryan at christine.ryan@ostomy.org or 207-985-9700. A heartfelt thank you to the following 2017 National Sponsors. Platinum- Hollister, Silver- Coloplast and Bronze- Convatec, Safe n Simple, and Hy-Tape.

By Megan Herrett

Adequately summarizing what our family has gone through over the past almost ten years requires going back to the very beginning.  Our daughter, Maggie was three months old when we realized that she looked a little jaundiced.  Our pediatrician agreed and ran what would be the first of hundreds of tests to determine what was wrong with our baby and why her liver function tests were so elevated.  After being seen by multiple specialists here in Boise for a few months, we were referred to a doctor at Primary Children’s Medical Center in Salt Lake City in November of 2008.

Photo by: Natalie Koziuk Photography (www.nkoziukphotography.com)

When Maggie was about six or seven months old, we noticed that she was starting to scratch quite a bit.  Her arms, feet, and ears were covered in scabs and scratch marks.  This itching was a side-effect of her liver not processing bile correctly – when not processed by the liver, the bile backs up into the bloodstream and circulates back through the body, resulting in an increase number of bile salts in the body.  It is these bile salts in the bloodstream that make an individual with a liver disease very itchy.

At first, we were able to control her itching through several medications but by the time she was 12 months-old, her itching had become unbearable.  At that time, her liver was deteriorating quickly and she was exhibiting some developmental delays as a result of the incessant itching.  In a matter of weeks, she had pulled out all of her hair and she was maxed out on her medication dosages.

We were presented with the option of an ostomy-placing surgery when Maggie was just over one-year-old as an alternative to a liver transplant.  The purpose of her ostomy would be to (1) drain bile from her body to combat the itching, and (2) slow the progression of her disease by giving her liver a much-needed reprieve.

To be honest, I was devastated when I first heard the words, “ostomy bag.”  I imagined a life where Maggie would never wear a bikini or be a cheerleader or be captain of her swim team – all very big concepts when you are talking about a one-year old child.  I imagined her being bullied because she was different.  But, we needed a solution…and we needed to act quickly.

Photo by: Natalie Koziuk Photography (www.nkoziukphotography.com)

Maggie underwent ostomy surgery on October 30, 2009, and we haven’t looked back.  She is now eight-years-old and is thriving health-wise as well as academically.  Additionally, she is also excelling on a competitive gymnastics team.  And although Maggie absolutely beams on the outside, she struggles with confidence because of her ostomy pouch.  She is fiercely private and does not want any of her peers to know.  My husband and I have worked tirelessly to emphasize to her that her pouch is nothing to be ashamed of – after all, it saved her life and she would not be the person she is today without it.

In 2010, we were blessed by the birth of our son, Winston.  We soon discovered that he was plagued with the same disease and would then undergo the same surgery when he was just over one-year-old.  Although this news was devastating at the time, we have come to realize that it was a blessing in disguise.  Both of them have the same liver disease and both wear ostomy pouches – commonalities that they can rely on when the going gets tough.

I can still recall my “aha moment” though – that moment when I realized that we would not be a family that sat idly by and let her pouch be a source of shame or embarrassment for her.  Maggie was probably two years old at the time and we were in the throes of potty-training, where our previous line of attack of onesies and bib overalls to prevent her from yanking her pouch off, were no longer an option.  She was finally in a shirt and a pair of pants…and her ostomy bag was peeking out from the hemline of her shirt as we left a restaurant.  A man entering the restaurant noticed her ostomy pouch and said, “Ewwwww!  What IS that?”  Although my initial reaction was one of anger and dismay, it was then that I realized that working with her would be only one piece of the puzzle – we also needed to work with the community to help educate, support and raise awareness for those like Maggie so that the shame, fear and embarrassment would fade away to empowerment and pride.

It was this “aha moment” that led me to contact the United Ostomy Associations of America in January of 2016 about bringing their Run for Resilience Ostomy 5k to Boise.  My inquiry was met with a resounding “YES!”  We held our inaugural race on Saturday, October 8th and had over 160 people registered for the 5K and Kids’ Mile events.  We even had participants, including ostomates and ostomy nurses, drive in for the race from Spokane, Washington and Lewiston! And Hollister even donated ostomy pouches to include in our race registration bags.  If nothing else, I am hopeful that this year we laid the foundation for many successful years to come and got some ostomy-related dialogue started.  Instead of “ewww,” maybe people will say, “Oh, I know what that is and that saved their life!”

The Boise Ostomy 5k is now in its 4th year! For more information on our Run for Resilience events around the country visit www.ostomy5k.org

The 5th Annual Run For Resilience Ostomy 5k will be held on Saturday, October 6, 2018.  All proceeds benefit the United Ostomy Associations of America, Inc (UOAA) charity, a 501(c)(3) organization. Donations are tax deductible.

Registration Coming Soon!

RACE DAY SCHEDULE (tentative)

7:00 a.m. Registration
8:00 a.m. 5K Run/Walk
9:00 a.m. Kids Fun Run
9:15 a.m. Awards Ceremony

Kids Activities and bidding at the silent auction throughout the morning

RACE COURSE

The race will be held near the Southpoint Mall area of Durham. The race will take participants on the scenic American Tobacco Trail (ATT) over the new I-40 bridge extension.  The out-and-back course will start and finish at the parking lot on the grassy knoll next to the ATT located off of Renaissance Parkway in Durham, NC.  The turn-around will be on the ATT, just before where the trail crosses Dunhill Drive. This 5K course is flat except for one uphill section on the ATT just south of the I-40 bridge.  This course is a timed race.

PARKING

Ample parking is located at the Renaissance Village shops off of Renaissance Parkway at 8160 Renaissance Pkwy, Durham, NC 27713

PACKET PICKUP

Pre-race Packet Pick up:  To be Announced…

PRIZES

Prizes will be awarded to the top 3 male and top 3 female overall finishers, age group winners, Stroller winner, and the top 3 ostomates.

AGE CATEGORIES
<15
15-19
20-29
30-39
40-49
50-59
60+

T-SHIRTS

Tech T-shirts will be included with registration if registered before the deadline. Race shirts will be either unisex or female v-neck cut. You are guaranteed a race shirt if you register by September 20th. You may purchase additional race shirts for $10 each.

OPTIONAL OSTOMY POUCH

Race registration bags will have typical race/sponsor promotional items, ostomy education materials, and most importantly an ostomy pouch. We encourage non-ostomate participants to put on the pouch for the race to improve awareness and empathy for the challenges faced by people living with ostomies.

FAMILY ACTIVITIES

The Run for Resilience Ostomy 5k will be a family-friendly event including kids’ activities during the event.  Specific kids’ activities include:

– 50-meter dash

– Face Painting

-Cornhole

-Coloring

FUNDRAISING

Set up your own personal or team fundraising site and get your friends and family to reach your fundraising goals.  If you raise over $250, you will receive a unique and limited fundraising tech shirt.  Stay tuned for the new fundraising site.

SPONSORSHIP

If you are interested in sponsoring the race, please contact us at 5kregistration@ostomy.org!

DONATIONS

We will be having an incentivized fundraising challenge for those individuals who raise over $250. Those who raise $250+ will receive a custom t-shirt.  Please visit www.ostomy5k.org for more information!

 

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