Breath of Hope
Local Businesswomen Use Their Talents to Fight a Rare Disease
By: Dawn Mundy

Local professional women are using their abilities, contacts and passions to raise money and awareness for a rare women’s disease. You can make a difference, too.

What do you do when you find out you have a potentially fatal disease that not even your doctor husband has heard of? If you’re Cindy Beasley, you get busy.

In 2001, Cindy was diagnosed with lymphangioleiomyomatosis, or LAM, a rare and progressive lung disease that affects only women, usually in their childbearing years. Symptoms include shortness of breath, cough, chest pain or lung collapse. There are currently 1000 known LAM patients in the U.S., but since LAM is often misdiagnosed, there could be thousands more women affected and going untreated.

As Cindy learned more about the disease, she realized that she had to do something. So she called her friends, started brainstorming, and together they developed Chari-Teas, elegant afternoon teas to raise money and awareness for LAM. “I was inspired by the death of a fellow LAM patient,” she says. “I did not want my children to lose their mother just as their own lives were beginning. I wanted to be able to look them in the eyes someday and tell them I did everything I could to fight this disease.”

Cindy put her business administration and market research background to work, and started the Kansas City Friends of the LAM Foundation. “This has been the culmination of my personal and professional skills,” she says. “I have enjoyed putting together a team of women and managing a successful fundraising and awareness event.”

A teacher at St. Teresa’s Academy, Denise Rueschhoff, utilizes her people skills and school contacts to coordinate the many student volunteers who serve refreshments at each year’s tea. Her fundraising experience has made the silent auction a memorable and profitable event.

Janet Vitt is an analyst and an RN at Sisters of Charity of Leavenworth Health Services. In addition to helping with invitations and countless details that make the teas special, Janet also uses every opportunity and contact possible to spread the word about LAM.

The 2006 Tea Co-Chair is Jennifer Lehr, M.S. CCC-SLP, and a Member/Owner of Advantage Speech Services, L.C., a private speech pathology practice. She uses her organizational and communication skills to pull things together. She loves working with a team of highly effective women to ensure that every aspect of the tea is planned, prepared, and executed successfully. “It’s an easy and pleasurable job when working with women so dedicated!”

These are just some of the women on the team. Over the last three years they have raised over $30,000 for LAM research and have educated hundreds of women. Kansas City was the first to hold a Chari-Tea and has become the model for other LAM teas being held around the country. Cindy says, “Our attempts have inspired others, thus multiplying our efforts. Our ’ripple’ has turned into a ’wave.’”

The national LAM Foundation was started in 1995 by Sue Byrnes, a working mom looking to help her daughter, a LAM patient. Because of Sue and Cindy and women like them all over the country, awareness of LAM is growing, clinical trials of a promising treatment are beginning, and a breath of hope is on the horizon.

Fundraising can be an intimidating idea. Life is so busy, how can there possibly be time for another thing? Cindy acknowledges that making time for it is not always easy. “However,” she says, “even the smallest of efforts can make a profound difference in the lives of others.” Denise says getting involved “is much better than sitting back hoping that someone else is going to get the job done.”

Some ways you can make a difference.
1. Include. Share your vision with friends and associates. Jennifer encourages people to “jump in with both feet for a cause you have passion about. With a little digging, you’ll be able to find someone to help and then you are a team with endless potential.” Janet says that “once you’re involved, you don’t have to do it all. You contribute along with everyone else and produce amazing results.”
2. Imagine. There are many ways to raise funds and awareness: runs/walks, teas, auctions, and more. Brainstorm, research and dream big.
3. Inquire. Ask, ask, ask! Talk to businesses, friends, neighbors, doctors, co-workers. They’ll be glad to share information, contacts, resources, time, and even money.

All of the women involved in the LAM Chari-Teas say that being involved in something greater than them is very rewarding. You use your current skills, develop new ones, and the fulfillment you experience is beyond words. And by getting involved, you are helping to change lives.

Dawn Mundy is a freelance writer and co-owner of The Wordsmiths. Dawn has been involved with the Kansas City Friends of the LAM Foundations for three years, helping with writing and publicity. Contact Dawn at dbmundy@kc.rr.com