Faces of Hope

Foundation shines spotlight on online donor registry
Dance studio offers free lessons to transplant recipients

Felicia Thomas-Lynn

At first, Diane Mancini couldn't believe her ears.

After nine months of grueling yet life-sustaining kidney dialysis treatments, she received the news she had been waiting for in a simple whisper.

"The head nurse came over to me and said, 'Diane, we have a match for you,' " said Mancini, who at the time was dozing in and out of consciousness during one of her regular treatments. "I thought I was dreaming."

But it wouldn't take long before that dream turned into reality as the 47-year-old was prepped for successful transplant surgery that would substantially extend her life.

"After the transplant, they told me I probably would have lived a couple more months," she said.

Instead, the mother of five was able to watch her children grow into adulthood and celebrate the many milestones along the way. Now she is giving back.
New online registry

At the age of 64, she and her husband, Dan, have literally danced their way into the spotlight. They are part of a National Kidney Foundation of Wisconsin campaign aimed at raising awareness for the state's online donor registry.

In southeastern Wisconsin, 1,057 children and adults are waiting for lifesaving organs, including 899 people who are waiting for kidneys, said Cindy Huber, the foundation's executive director.

"Diane is alive and enjoying life and able to dance, be a mother, volunteer and give inspiration and hope to others because a family or individual made the decision to be a donor," Huber said.

The foundation, which conducts extensive public education and outreach, also provides health screenings for adults at risk for kidney disease. "Everything we do is free of charge," Huber said. "We are kind of that small silent charity that has been around in our community since 1968."

Its latest and most effective tool is an online registry (www.yesiwillwisconsin.com)" target="_blank">www.yesiwillwisconsin.com) which was created last April and allows people to quickly register to be organ donors.

For decades, she said, organ procurement agencies had mainly relied on the orange dot found on the driver's license of potential donors, which wasn't always effective.

"My purse could remain at the accident scene and because I am a single woman, with no relatives, no one may know that my final wishes are to donate whatever can be used," Huber said.

So far, 24,000 people have registered on the site, which is secure and only accessible by authorized procurement agencies, said Jay Campbell, vice president of organ and tissue donation for the BloodCenter of Wisconsin.

"It takes about three minutes. It's pretty quick," Campbell said. "We have already used it a number of times."

The website allows donors to create a binding consent that can be printed as a certificate and shown to family members, he said, but the normal protocol of supporting families through the grieving process still remains intact.

Mancini, whose diabetes led to her severe kidney disease and visual impairment, received two kidneys from a toddler to replace one of her nonfunctioning kidneys, and also later received a pancreas transplant.
Dance studio helps out

For the first time last year, she and her husband, of Wauwatosa, competed in the 2010 U.S. Transplant Games in Madison, thanks to the offer of free lessons to transplant recipients from a dance studio.

"For us, it's nice that we are able to donate our time and our art to something that is so meaningful for a lot of people," said Rick Soppa, a local Fred Astaire Studio owner, adding that the studio joined the transplant community after one of its own, Joe Josephs, died last year while waiting for a liver transplant.

Soppa said the studio will continue to offer its support.

The Mancinis, who walked away with silver medals during last year's games, earlier this year helped the foundation raise funds and awareness through its Spotlight on Life event.

"After years of dealing with medical issues, dancing has set me free," said Diane Mancini. "When I dance, I feel like I have no limitations. My creative spirit soars, and both my mind and body are energized.

"We embrace this gift of life."
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National Kidney Foundation of Wisconsin

Mission: To prevent kidney and urinary tract diseases, improve the health and well-being of individuals and families affected by these diseases and increase the availability of all organs for transplantation.

Address: 16655 W. Blue Mound Road, Suite 240, Brookfield, 53005-5923

Phone: (262) 821-0705

Web sites: www.kidneywi.org and www.yesiwillwisconsin.com

Faces of Hope focuses on Milwaukee-area people who need a hand and the organizations that are helping them. If you have story ideas, e-mail Felicia Thomas-Lynn at fthomas-lynn@journalsentinel.com or call (414) 224-2073.