lymphangioleiomyomatosis, or LAM, a progressive lung disease, with her son, then 14, Ryker at her side. Nolan, who was diagnosed with the disease in 1999, and her family have been hosting a fundraiser nearly every year for the LAM Foundation for more than a decade. –RA ARCHIVE
NAUGATUCK — Can you say lymphangioleiomyomatosis?
Madeline Nolan, 63, of Naugatuck has made that question the slogan of fundraising events for more than a decade.
Lymphangioleiomyomatosis, or LAM, is a progressive lung disease where smooth muscle tissue invades a person’s lungs, making it difficult to transfer gases into the body, and creates holes in the lungs, Nolan explained. This leads to cysts on the lung which can cause spontaneous lung collapse. The disease almost exclusively affects women.
Nolan, a health teacher at Crosby High School in Waterbury, has become very well versed in the disease having lived with it for more than 15 years.
“I was diagnosed in 1999. Jan. 11. You don’t forget,” Nolan said.
Nolan, who has lived in the borough for 32 years, and her family are getting ready for their annual fundraiser for the LAM Foundation, a nonprofit health agency that focuses on the disease.
This year’s fundraiser is a beer and wine tasting event April 25 from 6 to 9 p.m. at the Elks Lodge, 758 Rubber Ave. The event will feature a variety of beers and wines as well as food. Tickets for the event are $30 and can be purchased by either contacting Nolan at CureLam@aol.com or at Mountview Plaza Wines and Liquors, 727 Rubber Ave. The event is for people 21 years old and older.
Despite having a degenerative disease and having to carry an oxygen tank with her, Nolan is upbeat and quick to laugh. However, when she was first diagnosed she was shocked. She said she was not a smoker and did not work around chemicals, so she was very surprised by the diagnosis.
“At first it was terrifying. No one knew much back then,” Nolan said.
Nolan said that the LAM Foundation started in 1995, a few years before her diagnosis. In 2000, a year after she was diagnosed, Nolan decided to begin doing something to help the foundation spread awareness and help women like her that suffered from the disease.
“When I was diagnosed my children were young so we started with Backyard Bash. We had these backyard carnivals to raise awareness and raise money,” Nolan said.
The bashes included carnival games, a dunk tank and a magician, Nolan said.
Leading up to the bash the local children worked to help raise funds for event to donate to the LAM Foundation.
“The kids were amazing. My youngest, [Ryker Nolan], was about 9 years old at the time. Him and his friends would go into a business and say, ‘My mom has lymphangioleiomyomatosis’ or ‘My friend’s mom has … and we’re doing a Backyard bash. Can you donate,’” Nolan said.
Nolan said the business owners were usually so shocked the children could pronounce the disease they would end up donating money.
“That’s where the logo came from, ‘Can you say lymphangioleiomyomatosis,’” Nolan said.
Nolan said her children got the idea for the fundraiser because she told them about how she used to host a carnival in her back yard when she was a child to raise money for the Jimmy Fund.
As the years went on the event expanded to include the neighbors’ back yards. Then it moved to Naugatuck High School where the family sponsored a walk. Nolan said, now that her children are older, the event has turned into a beer and wine tasting.
When the fundraisers first started it was mainly just an event for friends and family, Nolan said. More recently, because the event now offers a beer and wine tasting, it has become more of a community event.
“A lot of people like beer and wine. They don’t necessarily know me or my family. But that’s nice too because that’s creating greater awareness and that’s our goal,” Nolan said.
Nolan was able to see how much of a community event her fundraisers had become after her family decided not to hold one last year due to work and family obligations.
“People were saying to me, ‘When are you having your thing,’” Nolan said.
For Nolan, it is about more than just raising awareness; it is about using the money to help make a difference.
Nolan said small fundraisers like hers can help fund a scientist’s research, which can help the scientist apply for a larger grant from the government and continue to study the disease.
“So our seed money goes to brilliant scientists who are then able to get more money for research. But that seed money started in little community events like this. Even though we are not having a $100,000 fundraiser, we are contributing,” Nolan said.
