We are pleased to announce that the Lymphangiomatosis & Gorham's Disease Alliance has received its Certification Letter from the U.S. Department of Treasury, Internal Revenue Service as an approved 501 (c)(3) public charity. Effective immediately, with this Letter, friends of the LGD Alliance will qualify under the IRS Code for tax deductibility for all donations made to advance the mission of finding treatments and cures for the often devastating disorders - lymphangiomatosis & Gorham's disease.

"Completing this certification phase and receiving the 501 (c)(3) status Letter enables the Alliance to begin fundraising efforts in earnest in order to extend our patient support programs, to establish a patient data/tissue repository, and to begin the first efforts in studying the causes of these serious diseases which always threaten to shorten the lives of those afflicted", said Jack Kelly, president of the Alliance.

"Lymphangiomatosis and Gorham's disease affect mostly very young children and young adults", said Sandy Goldfarb, VP of the Alliance. "This is a big step on the difficult journey for their dreamed-for cures", she added.

As a member of the Rare Bone Disease Patient Network (RBN), the Lymphangiomatosis & Gorham's Disease Alliance is pleased to announce that we have been invited to participate in the recently announced 1st Advances in Rare Bone Diseases Conference to be held at the facility of the National Institutes of Health (NIH) in Bethesda, MD, October 22nd - October 24th 2008.

Under the auspices of the U.S. Bone and Joint Decade (USBJD), the RBN-planned conference, will bring together for the first time, professionals in science and medicine who have an interest in rare bone diseases, to exchange scientific and clinical information, to develop new collaborations, and to propose a future research agenda for rare bone diseases. The conference is being co-chaired by Craig Langman, MD, Feinberg School of Medicine, Northwestern University, and Michael Econs, MD, Indiana School of Medicine. Lead participant for the Lymphangiomatosis & Gorham's Disease Alliance will be John Reith, MD, University of Florida College of Medicine.

"This is a major step on the path to discovering the causes of lymphangiomatosis and Gorham's disease; we are very excited about this development in rare disease science", expressed Jack Kelly, president of the Lymphangiomatosis & Gorham's Disease Alliance. "This is the first event anywhere in science or medicine, that we are aware of, which has expressed an interest in helping to define the factors which appear in the disease state of these orphan diseases.", said Jana Sheets, Founder of the Alliance. "It is a significant milestone for our growing community of patients." she added.

In just its second quarter of existence, the Lymphangiomatosis & Gorham's Disease Alliance is pleased to announce that it has nearly doubled its Board membership with the election in December 2007 of three new members. The new Board members are Allan Gammon, Wellington, New Zealand, Shannon Gareau, British Columbia, Canada, and Kathleen Olson, Wilmette, IL.

Mr. Gammon is an executive with British Petroleum in NZ, holds diplomas in management and production engineering, and is responsible for a changing portfolio of diverse projects including business strategy for long-term energy options, biofuels, and climate change. He is currently BP's representative on the Business Council for Sustainable Development.

Shannon Gareau is a radiation therapist on staff at the British Columbia Cancer Agency. She holds a diploma in radiation therapy, and is responsible for planning and delivery of radiation treatments to patients with serious conditions.

Kathleen Olson holds undergraduate degrees in Chemistry and Biochemistry, and advanced degrees in Pharmaceutical Chemistry.

Dr. Olson is manager of pharmaceutical R&D for Hospira, Inc., a company engaged in the development of specialty injectable pharmaceutical products.

"We are privileged and very fortunate to have these three new members join our Board", said Jack Kelly, President of the LGD Alliance. Mr. Gammon, Ms. Gareau, and Dr. Olson are all parents of children affected with lymphangiomatosis/Gorham's disease. "All three new members are very well qualified by their professional achievements and personal experiences to help our new foundation during this critical build-up phase. Our journey to find the causes and cures for lymphangiomatosis and Gorham's disease has advanced", added Mr. Kelly.

Lymphangiomatosis & Gorham's Disease Alliance Joins Rare Bone Disease Patient Network

It is a distinct pleasure to announce that The Lymphangiomatosis & Gorham's Disease Alliance has been accepted as a member of the Rare Bone Disease Patient Network (RBDPN), a coalition of rare bone disease organizations, established under the auspices of the U. S. Bone & Joint Decade (USBJD).

The USBJD is a global, multi-disciplinary initiative targeting the care of patients with musculoskeletal conditions - bone and joint disorders. The RBDPN is a coalition of bone disease organizations to advance the goals of the USBJD which are to improve the quality of life for patients with these disorders by advancing the knowledge and understanding of these diseases through education and research. The Network was formed so that rare bone disease organizations can pursue together their common objectives, such as joint bone-related projects, awareness and advocacy, knowledge-sharing, and integration into the larger bone community.

"Our membership in the RBDPN is very important to our foundation as we begin the very essential and critical task of defining the disease-attributes, and as we start the search for the causes of lymphangiomatosis/Gorham's disease, explained Jack Kelly, president of the LGD Alliance". "We expect to work closely with all the other members of this rare bone consortium", he added