Important developments and changes at MHAUS

by MHAUS President Henry Rosenberg, MD

With this communication, "The President's Blog" will come to an end.

No, it is not because I have decided to do other things or have nothing more to say, it is because I believe that this blog or forum should be open to others to express their views and perspectives. Hence, Dianne and I thought that we should rename the monthly essay "The MHAUS Blog" and open it to members of MHAUS including Board members, Professional Advisory Council members, Staff, Hotline consultants or MHAUS members at large. The only conditions are that the topic should relate to MH or MH like disorders, not exceed 2000 words and be appropriate and respectful to all viewpoints. I invite those interested to comment on MH related subjects or how MH has affected them and their family. All submissions will be reviewed by myself, a Board member and a member of the Professional Advisory Council. If anyone has any questions prior to putting in the effort please feel free to contact me.

Well, that is the first change for the New Year, but not the last. 2012 has seen many important developments and changes at MHAUS. Space does not allow me to enumerate all of them, but here are some highlights.

A new face for MHAUS Thanks to major efforts of the MHAUS staff, particularly Michael Wesolowski our Public Relations/Project Coordinator, we introduced a new, more interactive web site more in keeping with our increasingly socially networked world. The site permits more dialogue and communication among MHAUS members and friends. For example, members will be able to set up their own groups or communities to work on projects of interest to them. For example, a family who suffered a loss from MH has established such a group. They can communicate among each other in planning tributes, exploring family history, and new information concerning MH susceptibility among various branches of the family. Sure this can be done with other social media, but this forum will focus on topics of interest related to MH. We have had many inquiries from patients and professionals about establishing an MHAUS-like organization. That can be done, but the group/chapter function can do that more easily and permit more extensive sharing. MHAUS can supply, as requested, material that might be relevant to their interests to be translated into other languages.

Updated Educational Video After many years, our primary educational video has been retired and replaced with one divided into specific topics. Now learners can focus on one aspect of the syndrome at a time, such as the genetics of MH. The nine chapter video DVD was produced with the assistance of Dr. Rafael Ortega, Professor of Anesthesiology at Boston University School of Medicine. The approach is more interactive allowing the learner to focus on certain elements of MH. An on-line quiz will accompany the DVD. It is an ideal tool for education related to MH and is for sale on the MHAUS web site. Several hotline and professional advisory committee members contributed to the video.

Transfer of the MH Patient from Office-based facility to a Hospital After a long two-year gestation, a task force developed an Emergent Transfer Plan and Checklist recommendation for those situations where a patient develops MH in an office based-surgery center. The recommendation has been approved by representatives of MHAUS, the Society for Office-Based Anesthesia (SAMBA) and other professional societies interested in delivering safe care in the office. The task force had to take into account the great variability in size of practice, skills in work force and proximity to treating hospitals in creating recommendations. This set of recommendations complements the recommendations from MHAUS and the Ambulatory Surgery Foundation on managing MH in an ambulatory center. The transfer document consists of a laminated Emergent Transfer Plan and accompanying Checklist. It, too, is available on the MHAUS web site. This set is meant to be implemented into an annual MH training drill at those offices where surgery is performed. A special recognition award was given to Dr. Arnaldo Valedon for his efforts in leading the task force.

The MH Hotline Returns to MedicAlert Although MHAUS had worked with the Poison Control Center at Upstate Medical Center for many years in the operations of the MH hotline, funding cuts for such centers required a search for a new home in 2011. After a brief partnership with the Denver Health Poison Control Center, we decided to return to our original hotline partner, namely Medic Alert. MedicAlert is a worldwide organization made up of tens of thousands of members and a solid infrastructure for logging information and tracking responses to calls. MedicAlert is well known for providing identification tags for patients with life threatening conditions. The patients enter the data on their condition and their caregivers contact information into the database of the organization. If there is an emergency and the patient cannot respond, the contact information can be obtained through the identification tag service. We hope that the data can provide greater understanding of the manifestations of MH.

New Development Officer Earlier in the year, Sharon Dirksen who was doing a great job as our scientific officer received an employment offer that was too good to pass up. It met all her requirements for her "close to ideal" job. So, the Board faced a challenge: try to find another scientific officer, or identify an individual who could add new skills to our armamentarium. After much discussion, we decided that a development officer was what was needed at present. Fortunately, the right person for the job was not too far away. Lisa Iannello worked for the Farmer's Museum a multimillion dollar operation in Cooperstown, NY, but they were undergoing a reorganization. She joined us in the summer in a half-time position and has jumped right into the action. For example, she has just submitted a grant for funding our November 2013 scientific conference in Toronto, Canada. Lisa, meanwhile, is busy learning about our many programs and supporters. I am sure you will hear from her before too long.

There's more, but I think that is enough for now. Thanks to the Board, the staff, and all of you, MHAUS is in a stronger position now than ever before. As we continue to grow, fresh ideas and opportunities arise, but more of that next time when I discuss the next MHAUS scientific conference in November 2013, hands on training for MH preparedness and exciting information about dantrolene in managing genetic disorders.

Thank you all for your support and confidence in us as we design and carry out the many lifesaving programs of MHAUS. My best wishes to you and all your loved ones for a joyous, healthy and happy New Year.