A Message from the President of MHAUS

Dear MHAUS supporters and friends.

From the beginnings of MHAUS in 1981, one of the main goals has been to keep the health care and patient community aware of the latest information concerning MH and MH related syndromes. For example, our newsletter, first printed in 1982, was named The Communicator.

Fast forward with me now to the 21st century: communication is now possible in many ways that were not even imagined in 1981! Web sites, email, discussion lists, chat rooms, podcasts, e-newsletters, and blogs are just a few of the vehicles we use to share information rapidly. MHAUS uses many of these newer technologies to keep in touch with our MH community and membership.

I decided to use the newer electronic formats to keep you informed on the latest information concerning MH and MHAUS and will share with you the most significant news as I see it, in this regular monthly message via this blog and occasional podcast.

So here we go... Let's start with the basics... Just who and what is the Malignant Hyperthermia Association of the United States, or MHAUS?

MHAUS is a community of physicians, nurses, health care workers and patients who have a special interest in this unusual, potentially fatal, inherited disorder. Some of these individuals are experts in MH, others are patients, and still others work with patients who may be at risk for MH. Then there are those who have a special interest in the disorder for many other reasons.

MHAUS is a not-for-profit organization governed by a volunteer board of directors. Members of the Board are drawn from the health care community, patients, and businessmen and women. The Board meets at least three times a year, including a yearly two-day strategic planning retreat. They set goals and objectives, approve programs, and oversee the organization's finances. Like other boards, there is an elected President, Vice President, Secretary and Treasurer. There are currently 10 members on the MHAUS board.

The staff of MHAUS is located in Sherburne NY, near Syracuse, in Upstate New York. The staff carry out the day-to-day activities, such as ensuring that queries are answered, MH educational needs met, the MH Hotline functions well, and programs are developed and carried out in an effective manner. All publications, consensus statements, etc., are reviewed by a professional advisory council (PAC) of MH experts. The staff consists of an executive director and five other individuals with responsibility for the varied functions of the organization.

MHAUS sponsors two subsidiary organizations; the Neuroleptic Malignant Information Service (NMSIS) and the North American MH Registry (NAMHR) of MHAUS. NMSIS is dedicated to providing information and support to those who need related to the neuroleptic malignant syndrome. NMS resembles MH in many ways in that it is a potentially fatal syndrome characterized by high body temperature and muscle destruction. However, the disorder is not inherited and is triggered by agents generally used in the treatment of certain psychiatric conditions. NMSIS is headed by Dr. Stan Caroff, Chief of Inpatient Psychiatry at the Philadelphia VA Hospital and is guided by a professional advisory council.

The North American MH Registry is guided by Dr. Barbara Brandom, a Pediatric Anesthesiologist and Professor of Anesthesiology at the University of Pittsburgh Medical Center. A Professional Advisory Council

provides input and guidance to the Registry. The Registry was started in 1988 with the purpose of collecting specific information related to MH events and correlating the biopsy testing results with the clinical manifestations of MH. This data then serves as a databank to be mined for information concerning presentations and management of MH. Publications in peer-reviewed journals appear regularly based on the data. The activities of the Registry are reviewed by the Institutional Review Board (IRB) of the University of Pittsburgh in order to comply with rules related to research involving humans. A database manager and part-time secretary staff the Registry; the largest repository of patient-specific information related to MH in the world.

A group of volunteer physicians who are expert in the management of MH form the MH Hotline consulting group. These experts serve on the hotline for at least four weeks each year and share their findings and observations with other consultants via a closed internet-based discussion group.

The only persons who are compensated are the staff located in Sherburne and the Registry's database manager and part-time administrator as well as our recent hire, a part-time Scientific Officer. All others are volunteers.

This is a brief overview of the organizational structure of MHAUS and, of course, does not include a description of the many programs and publications we offer (mostly free or at minimal cost).

In order to provide you with relevant information, please let me know what you would like to hear about the latest research, diagnostic testing, being prepared for MH, etc., by emailing me at [email protected]. Also, please feel free to share your feedback and suggestions as to what we can do better, or what we are doing well.

A patient advocacy organization needs the input of patients and others who have a special interest in the disorder the organization represents to help it grow and meet its full potential.

Until next time...