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Saturday, November 13, 2010

Local support group in running for Pepsi Refresh grant By ASHLEY PETERSON

OWATONNA — It was the diagnosis of fibromuscular dysplasia (FMD) — a deadly disease — in two Minnesota women that inspired first a friendship, then the creation of a support group and now an opportunity  to earn $50,000 in grant funding from the Pepsi Refresh Project.

When diagnosed, Kari Ulrich and Jennifer Moreen were two women in their 30s who could have been poster women for healthy and active lifestyles. Moreen was an avid skier and Ulrich was training for a half marathon when they were diagnosed with FMD in 2009 and 2007, respectively. The disease is one that limits their ability to perform high-impact sports and requires extreme caution in daily activities, such as laying their heads in a sink at the salon and lifting anything more than 10 pounds.

“When I was diagnosed, my doctor said ‘Oh you look too healthy to have anything wrong,’” Ulrich said. “There’s been a huge struggle with patients with FMD because friends and families don’t understand. It’s such a misconception that you’re healthy when you feel like a walking time bomb.”

In April of 2009, Moreen was driving through Wyoming with her husband, on their way back from a ski trip in Utah, when she had a heart attack. She was 38 years old.

“The ER doctor kept me there, suspecting I had a heart problem,” she recalled. “I didn’t have typical risk factors they look for in heart disease, yet tests showed I had a heart attack.”

Doctors discovered Moreen’s right coronary artery had torn and required four stints in the artery. After she went home and tried to return to normal, there was an additional coronary artery dissection that required a fifth stint.

“By now, I was like ‘You’ve got to be kidding me,’” she said. “I wanted a second opinion. A simple CT scan ended up showing FMD in my iliac arteries in my abdomen, my right kidney, heart and both carotid arteries in my neck.”

FMD is a non-inflammatory vascular disease that affects artery wall development. There is no plaque buildup with FMD — the problem exists in the artery itself. Instead of a long and straight artery, women affected by FMD have arteries that look more like a string of beads with webbing inside that blocks blood flow and is susceptible to tearing.

It wasn’t until a year ago, in November 2009, that Ulrich and Moreen crossed paths. The women first connected in an online support website called “Inspire,” sharing the FMD diagnosis and joining together to create a support group in the Midwest for women who have the disease and are searching for a place to gather more information and become educated about a disease that often goes undiagnosed in women ages 15-50.

Both from Minnesota — Moreen lives in Plymouth, Minn. and Ulrich in Albert Lea — the women began messaging each other about their interest in creating a FMD support group. They finally had the first meeting in April 2010.

“It choked me up because I had never met anyone with FMD before. That was really cool,” Moreen said, getting emotional about the impact the group has had on her.

The organization is dedicated to supporting women with vascular disease and aims to meet once every six months at Mayo Health System’s Albert Lea Medical Center. Currently, the organization is running with no budget or funding — Moreen and Ulrich donate their time and money to organize the group and schedule doctors or other educational speakers to engage those who attend.

In an attempt to first and foremost educate women and their families about the affects of FMD ,and secondly to gain funding for the group, Moreen and Ulrich have applied for a Pepsi Refresh Project grant.

“It’s very difficult to have your grant application accepted to the project,” Moreen said. “They accept only 1000 applications from across the country once a month and you have to stay up until midnight to apply.”

After two or three months of application denial, the women’s application for Minnesota Women’s Vascular Advocates was finally accepted with 999 other applications for part of November’s $1.3 million in grants. Under the health category, the MWVA group has applied for $50,000 in funding that would benefit women across the Midwest.

The group creators said their first two meetings had women with FMD and their loved ones from Minnesota, Michigan and Iowa in attendance, so the grant would help people in a tri-state region and beyond. In order to receive the $50K in funding, the group must receive enough votes through the month of November to be in the top 10 of the $50K category. It is a popularity contest — those who gain the most votes over the period of one month will receive the funds.

“We’re just trying to get the word out as much as we can,” Ulrich said. “Not just to get people to vote, but learn what we’re trying to do. We want people to know we’re out here because there are others out there with this disease and they don’t know we’re here.”

Voting will be open through Nov. 30 and the top 10 winners will be announced Dec. 1. To vote, visit and search under the health category organized by the $50,000 request. The title of the group’s application is “Start an organization dedicated to support women with vascular disease.” The project has already granted $10.6 million to organizations and projects across the country.

Ashley Peterson can be reached at 444-2378.

MWVA Co-founder Jennifer Moreen, MWVA Medical Advisor Christopher A. Foley MD, MWVA Co-Founder Kari Ulrich RN

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