1st Annual Golf Outing

KEWASKUM, Wis. (LGDA News) – New friendships were forged, thousands of dollars were raised and a world record was broken at the first LGDA Golf Outing Sept. 24.

Proceeds totaling about $18,000 went to the Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) for research of these rare and debilitating diseases.

Nearly 60 golfers and 50 more dinner attendees enjoyed a fun day of golf, mingling, and participating in the silent auction and bucket raffle at Hon-E-Kor Golf Club. The outing offered about 80 prizes.

“I was honored and humbled to see so many people come together and support the LGDA and its mission to find a cure, especially given this was a first-time event. Our expectations were blown away,” said outing Co-Chair and Kewaskum alumnus Scot Wiesner.

A 1992 Kewaskum graduate, Wiesner has battled through these diseases since he was a child. Though Scot is forced to get around in a scooter, he considers himself fortunate to be alive and able to start a fundraising event to help others who suffer from the diseases. The chairman and founding member of the Board of Directors of the LGDA knows it’s likely too late to help his own symptoms.

“I’m in my late 30s. Some kids who get this disease don’t reach teenage years,” he said.

Lymphangiomatosis is characterized by overactive lymphatic vessels that invade the bone. They can progress to other bones and lead to deterioration of bone and tissue and vital organs.

Gorham’s disease is a musculoskeletal condition in which spontaneous, progressive deterioration of the bone occurs through abnormal lymphatic proliferation. This deterioration can cause weakness in bone structure to the point of easily breaking and even the disappearance of the bone entirely.

Lymphangiomatosis & Gorham’s disease are believed to be very closely related, pathologically.  Either disease attacks various and multiple parts of the body.   The cause is unknown, and there are no standards of care.

Though connected through the diseases, many of the outing’s attendees had never met before. Three of the attendees from across the state – ages 36, 13 and 2 – have at least one of the diseases, breaking a world record for most patients ever to be in one room at the same time. Some 300 people across the world are known to be afflicted.  Many more are believed to go un-diagnosed.

The diseases are so rare that 13-year-old Claire Mantey of Green Bay was once featured on the Discovery Channel’s “Mystery Diagnosis.”

“Like Scot, I was humbled by the passionate, compassionate and generous nature of the crowd,” said Mitch Maersch, event co-chair and longtime friend of Wiesner. “Beyond the money raised, new, lifelong friendships and support networks have now been formed. That’s just another benefit we didn’t necessarily predict during the months of planning, and it serves as another reason starting an annual get-together was so important.”

One evening highlight was a surprise $10,000 corporate sponsorship from Dash Financial Corporation that earned a roaring ovation from an already energized crowd.

“My hand was shaking. I could barely speak,” said Wiesner. “This will do immeasurable good in the world of research. This is one of many examples of the kind of character of people connected to the LGDA. It’s special and good-hearted people and organizations like Dash Financial Corp. who will someday help us find a cure.”

The LGDA was founded in 2007 as a 501(c)(3) nonprofit foundation in Florida by Jana Sheets. Jana has since passed away from the diseases but smiled on the outing, sending a rainbow through the cold and rain that brightened everyone’s day.

“Jana is smiling,” said Jana’s father, Jack Kelly, who made the trip from Florida for the event. “She would be proud to see the LGDA now has an annual fundraising and awareness mechanism that connects patients and forwards research.”

Plans are already under way to continue the outing next year.

To make a donation to the LGDA, click here.