Boca Raton, Florida. August 29, 2009. With the help of a local Pub in Boca Raton, FL, the Lymphangiomatosis & Gorham’s Disease Alliance (LGD Alliance) ran its first organized fundraiser to raise money to support its new research program. The Co-ordinator of the event, Pam Kalin, proprietor of a local Palm Beach County paving company, presented the proceeds of $1528 to Jack Kelly, president of the Lymphangiomatosis & Gorham’s Disease Alliance.
The event was organized just a few weeks ago. With the help of a small volunteer committee, gifts and gift certificates were obtained from several local business and individuals in west Boca. A giant sign was also donated to promote the affair. The team sold raffle tickets for the donated gifts and a cash prize drawing – which the winner donated back to the Alliance! Food was provided by local friends and patrons of the Pub – Moon’s Tavern, owned by Bob & Rose Mooney of Boca Raton.
This was a historic event indeed – our first public event to raise money to help fund the research to study the rare diseases – lymphangiomatosis & Gorham’s disease” , said Mr. Kelly. “In starting out, we have been very fortunate in having gifts from our Board members, and a significant gift in honor of our Founder, Jana Sheets. This has enabled us to fulfill key elements of the first part of our mission: – providing patient support via a new website; establishing a first-ever directory of Doctors Around the World (DAW’s) – enrolling doctors who can treat patients of these orphan diseases; attending medical conferences and workshops to promote awareness among the medical/scientific community; and, participating as a member or attendee in such medical & rare disease associations and conferences, such as the Rare Bone Disease Patient Network, the American Thoracic Society International Conference, the International Society for the Study of Vascular Anomalies, the Orthopaedic Research Society, the National Organization for Rare Disorders, the Genetic Alliance, and the Lymphatic Research Foundation”, Mr. Kelly explained.
“We are focused now on the second pillar - raising funds to support our research objective to identify the disease factors of lymphangiomatosis and Gorham's disease. Our friends in the community have shown extraordinary support for the Alliance as we take the first steps to find the causes”, said Mr. Kelly. “And, we are hopeful that other community-supported fundraisers will be held to help us build a sufficient fund to award funding for research projects that will bring us closer to developing life-saving treatments for lymphangiomatosis and Gorham's disease”, he added.
Pictured below: Bob Mooney, Owner of Moon's Tavern and Pam Kalin, the event organizer.
