Golf Outing Tops $100,000 Mark

By Scot Wiesner & Beth, Ryan and Claire Mantey

After 5 years of being a part of the LGD Alliance Golf Outing in Wisconsin as an organizer and enjoying the camaraderie of everything it has become, we are proud to say that we are well over $100,000 in funds raised for the LGD Alliance.

This event has become so much more than just a fundraiser for the LGDA, it’s also an opportunity for Warriors and their families to get together, meet and share stories. We’ve shared a lot of laughs and some tears throughout the years and are planning on continuing that into the future. We’ve all made a lot of new friends and added a more personal feel to an excellent support group. The Warriors that have attended this event aren’t just from Wisconsin; they have come from all around the country such as Kansas, Georgia, Florida and Michigan. At least one year, we’ve had  seven families represented and never fewer than four.

It’s not just the immediate families that have a great time. This event was set up to expand our circles and get more awareness out to the public about lymphangiomatosis (also known as generalized lymphatic anomaly or GLA) and Gorham-Stout disease. We could always use more groups around the country to start up their own events like this to help spread the awareness, enhance the Warrior families, and have a way to bring us all closer together to take away some of the solitude feelings that can happen with rare diseases like ours.

Raising over $100,000 in just 5 years says a lot about the support we get from our community and how we’ve been able to expand the word of our cause. The money raised through the Golf Outing has been used to support a number of efforts of the LGDA. One of the most important efforts supported by this event is the operation of the International LGDA Registry for Lymphatic Malformations (LGDA Registry). Established in 2013, the LGDA Registry collects data from patients to assist in understanding the natural history of GLA/lymphangiomatosis and GSD, their impact on patients and families, assess gaps in service, and connect families to research opportunities.