MH Timeline and World Events

• MH was first formally described in 1960 by Drs. Michael Denborough and Roger Lovell of Australia. They told of a young man who expressed great fear about his upcoming surgery because several of his relatives had died for unexplained reasons during anesthesia.

• The dramatic decline of mortality from MH began to occur with the introduction of dantrolene sodium.

• The first MHAUS board meeting with Owen Davison, Suellen Gallamore, Robert Luckrtiz, George Massik and Henry Rosenberg, MD was held in October 1981. Afterwards, Owen established contact with the World Health Organization (WHO), asking that it include MH among its list of recognized diseases and disorders. (No one there had heard of MH when Owen made inquiries following his son's death.)

• First issue of The Communicator newsletter for MHAUS was sent in the summer, the newsletter went to 288 names on the MHAUS mailing list.

• European Malignant Hyperthermia Group (EMHG) formed.
• Patient Wallet Card Introduced.
• First Family Teaching Conference in Philadelphia.

• First Biopsy Standard Conference in Chicago leading to North American Malignant Hyperthermia Registry

• The North American MH Registry (NAMHR) was formed at Penn State in Hershey. Doctors Marilyn and David Larach suggested that the Registry be founded. It was established jointly at Penn State University in 1987 by the North American MH Group of MH diagnostic centers and the North American MH patient support organizations, MHA of Canada and MHAUS. Marilyn was the originating director and Dr. Gerry Gronert was the first chairman of the Registry board of directors.
• MHAUS became a membership organization -- $25/year
• The membership of the association numbers in the thousands today and includes medical professionals from many disciplines as well as those who are MH susceptible (MHS) and their families, many of whom have had first-hand experience with the devastating impact of an MH episode. Members contribute $35 or more annually.

• The ASA Provides Grant Support for MHAUS and the MH Registry

• Identification of genetic mutation in pigs
• Judy Bellomo -- member of USA Women's Professional Beach Volleyball Association team died of MH

• MHAUS holds 10th Anniversary Conference
• Specific MH Mutation in pigs found
• One of the important steps in our understanding of malignant hyperthermia (MH) was the discovery that certain breeds of pigs develop MH and have proven to be the most reliable animal models. From them we have learned a great deal about the causes and treatment of the disorder. There are, however, some distinct differences between humans and swine in terms of MH triggering and treatment response. These differences will probably be ultimately understood when the complete mystery of MH is unraveled.

• First Mini Conference held in Washington, DC
• American Association of Nurse Anesthetists Recognizes MHAUS as Experts in MH
• MHAUS, in conjunction with Richard Hillman at Procter & Gamble Pharmaceuticals, produced an MH Information Kit, which included MH literature and interactive discussions on videotape in English, German, Spanish, Italian and French languages.
• Succinylcholine in Children -- Routine use of succinylcholine for elective surgery is best avoided in children.
• Report of cardiac arrest after succinylcholine in young males reported to FDA. Found to be related to hyperkalemia in patients with muscular dystrophy
• The FDA ordered the pharmaceutical companies that manufacture succinylcholine to change the package insert to indicate that the drug should not be used routinely in children. Some indications for succinylcholine are: airway emergencies, risk of aspiration and procedures where it is advisable that paralysis be induced within 60 seconds of induction of anesthesia. The reason for the change relates to complications such as masseter muscle rigidity rhabdomyolysis, and sudden hyperkalemic cardiac arrest in patients with undiagnosed myopathies (i.e., may be in the preclinical stage). Rhabdomyolysis may occur in as many as 40% of children given IV succinylcholine, whether clinical or "subclinical."

• MHAUS moved headquarters to Sherburne, NY
• MH Hotline Award Established; Dr. Sheila Muldoon Recipient

• AANA Award to MHAUS
• MHAUS Merges with NAMH Registry
• In 1995, MHAUS merged with the North American MH Registry, which had been established in 1987. The Registry collects and details information about clinical episodes of MH or suspected MH as well as results of laboratory tests concerning MH in order to learn about the manifestations of the disorder. The Registry Board and the director of the North American MH Registry of MHAUS provide information to the MHAUS Board on issues relating to research into the epidemiology, diagnosis and treatment of MH.
• Life-Saving MH Hotline Service brought in-house in 1995 and established with a toll-free number. The MH Hotline (through a nurse triage service) handles over 3,000 calls per year

• The position of Hotline Coordinator was created this year, to organize the activities of the Hotline into a systematic and efficient way while providing better overall service to the anesthesiology community. The Coordinator processes the necessary reporting forms received from the hotline consultants within five business days. This rapid turnaround helps to increase the response rate for the Adverse Metabolic Reaction to Anesthesia (AMRA) reporting form from the anesthesia providers. The AMRA form is entered into the Registry database, which is designed to provide comprehensive information for anesthesia providers regarding specific family histories. It also assists with MH research. MHAUS is grateful for an annual grant from the American Society of Anesthesiologists in support of this position.

• MHAUS Web Site introduced
• Dr. Greg Allen became 2nd director of North American MH Registry of MHAUS
• Dr. Allen was named the Director of the Registry, continuing the work begun ten years ago by Dr. Marilyn Larach at the Hershey Medical Center, Penn State University in Hershey, PA. Dr. Larach moved to Maryland to pursue other career interests but continues to be involved in MH research and education.
• MHAUS founded NMSIS - Stanley Caroff, MD, Director:

"I remember very well when Dick Hillman and Shari Williams came to visit me in Philadelphia around 1997 to propose the idea of adding an NMS component to extend the mission of MHAUS to other heat-related disorders, They were both wonderful about it, and their enthusiasm was infectious. I had already been collaborating with Dr. Rosenberg on studies of the relationship between MH and NMS, and with his support and the hard work of Dick, Shari and all the staff at MHAUS, we were able to establish the services of NMSIS."
-- Stanley N. Caroff, MD
Chief, Inpatient Service
Philadelphia VA Medical Center, Professor of Psychiatry
University of Pennsylvania School of Medicine

• The NMS Hotline was established to help medical professionals during an NMS emergency, staffed by volunteer NMS expert physicians specializing in psychiatry and anesthesiology.
• The NMSIS website, www.nmsis.org, provides up-to-date educational information on NMS and other heat-related disorders.

• MH Identification Program Introduced: This program was developed to offer reasonably priced identification tags to indicate MH susceptibility (and any other medical conditions). The tags are imprinted with the MH Hotline number to provide medical personnel immediate access to an MH expert in case of an MH emergency.
• The Prepared Patient pamphlet was created from the Kristin Duell Memorial Fund
• 1st MH Death reported in the U.S. during office surgery

• The North American MH Registry of MHAUS (NAMHR) moves to University of Pittsburgh
• Dr. Barbara Brandom appointed Director of NAMHR
• NMSIS Shah Educational Awareness Fund established:

"My wife and I wish to use the wisdom gained from our experience to implement some benefit toward the awareness of NMS."
-- Nickey Shah

• MH Procedure Manual Program introduced:
  • Three versions of the MH procedure manual -- Hospital, Ambulatory Surgery and Office-based Surgery -- all provide a comprehensive detailed protocol with a videotape, which allows personnel to train for and be prepared to manage an MH event. All three manuals are designed for the number of available personnel to assist with an MH crisis.
  • Manual training has the potential to reduce staff response time by 50 percent.

• MHAUS celebrates 20 years
• MHAUS forms Patient Liaison Committee:

The Mission of the Patient Liaison Committee is to serve the needs of MH-susceptible individuals and family members by providing not only educational materials but also access to MH expert consultants and a support network.

• MH Connections newsletter introduced for MHS Patients
• Molecular Genetics Workshop Sponsored by MHAUS
• Managing MH Risk -- Slide/CD-ROM Show introduced
• The Daniel Massik-MHAUS Anesthesiology Residents Writing Award established (Gary Haber, MD, 1^st award winner) through the generosity of one of the MHAUS founders, George Massik.
• MHAUS sponsors an annual manuscript award for anesthesiology residents and those who have recently completed training.
• MHAUS recognizes hotline experts through an annual 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.

• New mutation in ryanodine receptor gene discovered that appears to be causal for MH

• MH Alert Kit introduced for MH-susceptible patients
• MH educational information en Espanol introduced on Website
• MH Registry database available on World Wide Web
• NMSIS -- staff person hired to develop and manage NMSIS projects

• Molecular genetic testing for MH susceptibility available at two CLIA-licensed laboratories (PreventionGenetics LLC and Center for Medical Genetics, UP Medical center)

Molecular genetic testing is a form of analysis of a person's DNA to determine if he/she harbors specific mutations that have been associated with a disease. A change in a gene, known as a mutation, can cause that gene not to work properly. One virtue of genetic testing is that DNA can be extracted from cells that are found in a blood sample. Expensive and invasive techniques need not be used to obtain a DNA sample.

• MH Awareness Bands introduced
• NMSIS -- NMS pamphlet developed to orient patients
• NMSIS -- sponsors 1st annual Promising New Investigator research writing awards
• MHAUS loses beloved founder, Owen R. Davison

• MHAUS celebrates 25 years
• MH In-Service Kit introduced "The new In -service Kit will be an MH recognition tool and corresponding plan of action," states Henry Rosenberg, MD, CPE, President of MHAUS. "It offers medical professionals a thorough review in a convenient package."
• MH Regional Mini-Conference held in Westminster, MD
• MHAUS sponsored a Mini-conference at Carroll Community College and Carroll Hospital Center in Westminster, MD to share important updates on MH with medical professionals and MH-susceptible families. Attendees were presented with information on MH, molecular genetics of MH and the basics of genetic counseling to be able to better understand malignant hyperthermia.