Conferences - 2003

The Third International Melorheostosis Conference

of the

Melorheostosis Association

July 17—19, 2005

St. Louis, Missouri

Conference

Highlights

Eleven presentations by world renowned members of the Melorheostosis Association Scientific and Medical Advisory Panel and Guest Speakers.

Plans among members of the Scientific and Medical Advisory Panel for both individual and collaborative research projects.

Blood collection from patients as the initial step in the formation of a neutral repository to

furnish samples for future research. Details to follow on donating to the repository.

Patient Handbook: Questions posed by patients will be answered by our Medical Panel under

the direction of Panel Chair, Dr. Fred Kaplan to be published in a Melorheostosis Association Patient Handbook.

Patient case studies.

Many, many opportunities to talk with fellow patients and their families and with panel members and guest speakers.

NOTE: For scientific reports presented at the 2005 conference, please go to “Conference Papers.”

To read the 2005 Conference Agenda, click here.

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The Second International Melorheostosis Conference

of the

Melorheostosis Association

August 24-26, 2004

Michigan State University

The Second International Melorheostosis Conference, was a success far beyond our most optimistic expectations. Melorheostosis patients from throughout the U.S. and as far away as England came to meet with Dr. Fred Kaplan, Dr. Jill Helms, Dr. Eileen Shore, and Dr. Michael Whyte from our Scientific and Medical Advisory Panel, along with nine other well-known experts. We are grateful beyond words to all who participated — for their time, their wisdom and the invaluable information they shared. We also offer heartfelt thanks to Michigan State University for their generosity in hosting the Conference and Lyn Pickel and Alice Albin for their tireless efforts to make this Conference a reality. For detailed information about the Conference, please see the report in the Melorheostosis Newsletter, by clicking on the link provided on the homepage of this website.

Following up on some of the issues raised at the Conference, The Melorheostosis Association Board of Directors held a meeting October 15 – 17 in Winter Springs, Florida. While there, the Board consulted with Scientific/Medical Advisory Board member, Jeannie Peeper concerning the amazing success of her organization, the International Fibrodysplasia Ossificans Progressiva Association (IFOP). We are extremely grateful to Jeannie — and her warm and gracious mother — for giving us the benefit of her 17 years of experience in developing this wonderful organization. Jeannie, you are an inspiration to us all and we are truly grateful.

NOTE: To read the 2004 Conference Agenda, click here.

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The First Annual Melorheostosis Conference

July 18-20, 2003

St. Louis, Missouri

The 2003 Melorheostosis Conference was the realization of a dream to gather together for the first time melorheostosis patients, their families and friends, and treating physicians. This gathering resulted in a full weekend of invaluable information, personal sharing and exciting plans for the future.

Among the highlights of the Conference were:

-- plans for the formation of The Melorheostosis Association, a not-for-profit organization, and application for tax exempt status

-- a working draft of the Mission Statement for the organization

-- a fascinating and informative presentation by Mike Schroeder, Director of the ALS Hope Foundation, “Creating a Not-for-Profit Organization for a Rare and Incurable Disease: a Message of Hope” including screening of the organization's powerful promotional video

-- sharing, sharing, sharing of personal histories, information, and experiences

-- discussion of potential short-term and long-range plans

Conferences — 2003 – 2005