What is MHAUS?
An MHAUS Online Brochure
Last Updated: 9/30/2006

MHAUS Celebrates 25 Years of Patient Safety

 WHAT IS MHAUS?

MHAUS is the only association in the United States dedicated to the control of malignant hyperthermia (MH), a life-threatening genetic disorder. Personal tragedy and unsettling experiences with MH lead four individuals, Suellen Long Gallamore, Owen Davison, Robert Luckritz and George Massik, with the help of Dr. Henry Rosenberg, a researcher in malignant hyperthermia, to establish in 1981 the Malignant Hyperthermia Association of the United States to educate the medical and lay communities about MH and serve as a resource to families affected.

The membership of the association numbers in the thousands today and includes medical professionals from many disciplines as well as MHS individuals and their families, many of whom have had firsthand experience with the devastating impact of an MH episode. Members contribute $50 or more annually.

A Board of Directors governs MHAUS. Most Board members have a personal connection with an individual who is susceptible to MH or have a strong interest in the problem.  All volunteer their time and expertise. The Board sets association policy and directs staff operations.

A Professional Advisory Council (PAC) advises the Board on formulation of all MHAUS medical policies and decisions, and the PAC members regularly respond to MH inquiries from patients and medical professionals.

In 1995, the North American MH Registry merged with MHAUS.  The Registry was established in 1987 by Dr. Marilyn Larach along with several MH biopsy center directors. The Registry collects and details information concerning clinical episodes and the results of laboratory tests concerning MH in order to learn about the manifestations of the disorder.  The Registry Board advises the MHAUS Board on issues relating to research into the epidemiology, diagnosis and treatment of MH.

WHAT IS MALIGNANT HYPERTHERMIA?

Malignant hyperthermia (MH) is a silent, inherited metabolic disorder of muscle. Affected individuals usually appear perfectly normal and have no functional difficulties in everyday life. However, when these individuals are given a triggering anesthetic this silent disorder may turn deadly.

MH is "triggered" by specific general anesthetics (potent inhalation gas anesthetics and succinylcholine, a muscle relaxant). Preoperative evaluation and screening of those at risk, as well as prompt intraoperative detection of MH by the signs (increased carbon dioxide excretion, muscle rigidity and fever), together with prompt treatment with dantrolene sodium, will eliminate mortality almost entirely.

 MHAUS' MISSION

The mission of MHAUS is to promote optimum care and scientific understanding of MH and related disorders.

MHAUS has four primary goals:

1. Educate the entire spectrum of medical professionals so that MH is rapidly recognized and properly treated by persons in all of the medical disciplines.

2. Advise and prepare all medical facilities in the United States for prompt diagnosis and immediate treatment of an MH episode.

3. Help MH-susceptible patients and their families learn to live with MH susceptibility and share with them the experience and knowledge which has accumulated about MH.

4. Encourage and support research in MH, especially a highly accurate noninvasive diagnostic test.

Thanks to the efforts of MHAUS and similar organizations around the world, the mortality rate has been markedly reduced. Also, these efforts have helped to identify forms of MH that were not previously recognized by the medical community. MHAUS continues to help advance this field.

 SERVICES AND EDUCATIONAL MATERIALS

A variety of services for MH-susceptible individuals, their families, medical professionals and the public at large are provided by MHAUS.

  • The MH Hotline is perhaps the most notable service of MHAUS. The Hotline provides medical professionals with access to anesthesiologists who specialize in MH-crisis treatment 24 hours per day, 365 days per year. The MH Hotline consultants provide added expertise and support to medical professionals for successfully managing an MH crisis and answer pre-, post- or intraoperative anesthesia questions. Over 1500 emergency calls are handled by the Hotline per year.
  • The Website for MHAUS (www.mhaus.org) contains the most recent information, which includes member services, articles, pamphlets and a message board where informal discussion between MHS family members, and sometimes medical professionals, can take place.
  • The Communicator, MHAUS’ newsletter, is published quarterly to provide the latest news regarding MH. Each issue includes featured articles for broad MH educational value, a summary of the Hotline activity, profiles on MHAUS’ professional advisors, announcements of happenings and important events, and notices of new MHAUS services and programs. Receiving The Communicator is one of the benefits of being a member of MHAUS.
  • Medical identification tags, to alert medical professionals to a patient’s MHS status in the event of an emergency, may be obtained through MHAUS. The MH hotline number is imprinted on each tag, effectively plugging emergency room personnel into a patient’s needs.
  • MHAUS exhibits at several scientific and professional anesthesia-related conferences annually to provide up-to-date information regarding MH knowledge and research. MHAUS’ educational literature is distributed at these venues.
  • The MH Procedure Manual is an exciting new program developed for management of MH in the various OR settings. The manual for hospitals provides a comprehensive detailed protocol and a videotape, which allows hospital personnel to train for and be prepared to manage an MH event. Two similar versions have been developed, whice are specifically for the freestanding ambulatory surgery center and for office-based surgery.
  • Patient regional mini-conferences are sponsored occasionally by MHAUS where presentations are given by experts in the field of MH. The conferences provide a medical/scientific update for those already acquainted with MH, as well as offer the opportunity to present questions and concerns to the featured MH experts.
  • Support services and printed materials for both MHS individuals and medical professionals are available from MHAUS. In addition, patients may obtain referrals to MH testing centers, wallet cards listing the safe and unsafe drugs, sample letters to inform relatives and local hospitals, and a letter for insurance concerns. Literature is provided at a very low cost.
  • A variety of educational information in the form of brochures, posters and videos.

"Our wishes are to make current information about MH available to all who need it."
             – Suellen Gallamore, a founder of MHAUS, 1982

 SCIENTIFIC RESEARCH

MHAUS supports scientific research into the epidemiology, diagnosis and treatment of MH both directly, through research grants, and indirectly, as a solicitor of third-party funds for important MH research initiatives.

The North American MH Registry of MHAUS (www.mhreg.org) , designed to provide information for clinical care and research, is used to analyze and disseminate patient-specific clinical and laboratory information of MH susceptibility to scientific investigators and physicians caring for MH-susceptible patients. The objectives of the Registry are to:

  • Maintain a central database of patients with MH susceptibility and similar syndromes. With the patient’s consent, specific patient identifiers are included in the Registry.
  • Provide database services to MH diagnostic referral centers for standardization and validation of MH diagnostic testing procedures.
  • Investigate the epidemiology of MH in order to improve diagnosis, treatment and prevention of MH episodes.
  • Give a registered patient the security of knowing that their health professionals will be able to obtain specific information on his or her MH susceptibility status.

Awards and Grants offered by MHAUS

  • Through the generosity of Mr. George Massik, MHAUS sponsors an annual manuscript award for residents and those who have recently completed training.
  • MHAUS recognizes MH hotline experts through an annual MH hotline partnership award.
  • An annual media award is given to a member of the press or any other media that supports the goals and objectives of MHAUS.

 FUNDING

MHAUS operates solely on contributed funds. Contributions come from MHS individuals and their families, medical professionals, hospitals and ambulatory surgery centers, professional associations and corporations. Members of MHAUS receive several special benefits, including a discount on materials ordered. Because MHAUS is a 501(c)(3) organization under the Internal Revenue Code, all contributions are tax-deductible.  (To view the Contributor List for our last fiscal year, click here.)

Year-end gifts • Matching gifts • Payroll deductions • Stocks • Wills/Estates/Endowments

The donor options immediately above in red are all ways to support MHAUS. Many MH concerned individuals aid MHAUS in pursuing its mission through these options to make the most of their gift. Year-end gifts can be earmarked for a particular project or educational program. Employer matching gift programs can double the impact of personal gifts. Pre-tax payroll deductions can afford a tax break and suit financial planning needs.

The gift of stocks can avoid capital gain taxes. Wills/Estates/Endowments are gifts that keep giving, whether as part of an estate plan or in memory of a loved one; incentives include reduced taxes, avoidance of capital gain taxes, and financial security for loved ones. Another donor option is to designate MHAUS when donating through United Way and CFC. Contact MHAUS for further information.

Additionally, families concerned about MH have established four memorial funds to help support the work of MHAUS:

  • The Lila & Jerry Lewis Memorial Fund was established in 1986 to support MH research and special projects.
  • The Vincent A. Napolitano Memorial Fund was established in 1990 to support education of medical professionals.
  • The Solomon and Florence Rosenberg Research Fund was established in 1995 to support research.
  • The Kristin Duell Memorial Fund was established in 1999 to support education and awareness.

 NMSIS (www.nmsis.org)

In 1997, MHAUS developed a subsidiary organization, the Neuroleptic Malignant Syndrome Information Service.  Neuroleptic malignant syndrome (NMS) resembles MH in many ways but is a result of treatment with various drugs used in the treatment of psychiatric disorders.  A separate professional advisory council advises the MHAUS board on issues related to NMS.

FINANCIAL INFORMATION

All brochures may be purchased online through our eSHOP.