Progress preview: Vascular AvengerPublished 9:28am Wednesday, February 23, 2011
Editor’s note: Be sure to catch the full Progress Edition in the printed Sunday Tribune.
On Nov. 16 a story was published in the Tribune about two women trying to raise awareness about a disease they both suffer from — fibromuscular dysplasia.
Founders of Midwest Women’s Vascular Advocates, Kari Ulrich and Jennifer Moreen applied for a $50,000 grant through the Pepsi Refresh Project. Competing against 2,000 other organizations only the top 10 vote-getters would receive the grant. Ulrich’s idea finished in 22nd but received more attention than she ever imagined.
“We had 21,251 comments posted on our Pepsi Refresh site,” Ulrich said. “We found more patients because of comments and educated more people.”
Ulrich also found Natalie Neikro via Facebook, daughter of the late baseball all-star and World Series champion Joe Neikro and founder of the Joe Neikro Foundation.
Joe Niekro finished his 21-year career with the Minnesota Twins in 1987 and died in 2006 of a brain aneurysm in 2006 at the age of 61. Natalie Neikro founded the Joe Neikro Foundation to educate and raise awareness of brain aneurysms and Ulrich saw the possibility for a potential partnership.
“Our support group definitely includes those who have brain aneurysms,” Ulrich said, who has an aneurysm herself because of FMD. “MWVA patients are already excited to do a fundraiser for the Joe Niekro Foundation.”
Currently, MWVA doesn’t have nonprofit status so Ulrich and the organization are raising money for the Joe Niekro Foundation, which does. Ulrich said money raised goes toward giving education material to hospitals for doctors and patients to use and funding research.
“Last year Natalie did a fundraiser with the Minnesota Twins,” Ulrich said. “She has the baseball connection and I have medical connections so I think we’ll be a good team.”
While Ulrich has partnered with the Joe Niekro Foundation, MWVA keeps growing. Support groups are getting larger and she now has interested women from five states.
“I think it says more organizations like this are needed, and the medical community needs to step up and back these support groups,” Ulrich said. “Patients need more assistance than they’re getting.”
Secret identity: Founder of Midwest Women’s Vascular Advocates, volunteer RN
Base of operations: Albert Lea
Superpower: Advocating for people with chronic illness
Kryptonite: Trying to balance helping others and spending time with family
Affiliations: Husband, Michael, sons, Ben Leisen, 15, and Noah Leisen, 12
Origin: After being diagnosed with underdiagnosed vascular disease in 2007, Ulrich served on the board of directors for the Fibromuscular Dysplasia Society of America, but stepped down to help a young girl from South Africa suffering from fibromuscular dysplasia get medical care in the United States.
From that experience, Ulrich decided that there was more she could do to help women with vascular disease. She contacted Jennifer Moreen, of Plymouth, and together formed MWVA.