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2009 Challenge
We are living through some very difficult and challenging economic times at present.
Dear Friends and Supporters of MHAUS
We are living through some very difficult and challenging economic times at present. We understand how difficult it must be for many to plan for the future. You have been a supporter of MHAUS and our mission in the past. I am writing now to thank you for that support and hope that you will keep us in mind when you consider your end of the year charitable giving.
As an organization, MHAUS is also facing challenges and changes. However our determination to continue our educational, patient support and research activities remains firm. We are learning to do more with less and at the same time reach more providers and patients than ever before. We understand that the advice and counsel we provide can sometime mean the difference between life and death.
In this communication I will touch on some of the changes that are taking place and describe the exciting prospects for the future, which we will fulfill with your help.
One of the significant changes has been the sale of Dantrium®, the Procter & Gamble (P&G) formulation of dantrolene, to two companies. P&G has been the sole provider of Dantrium® since 1979 and has been a very generous source of support for MHAUS. We are sorry that the company has chosen to give up the brand, but appreciate the help they have provided over the years. We have already begun a dialog with JHP Pharma, the company that has acquired the brand for distribution in the
Our educational programs have expanded on the web and in other formats. New and updated material has been added to the web site and, with the help of our new staff member, Michael Wesolowski, we have entered the world of social networking. MHAUS has a “cause’ page on Facebook with hundreds of members around the world. In fact, the number of “page views” to our web site has jumped dramatically to over 2 million per year. We continue to develop new material in new formats to inform the health care community and the public about MH. For example, we will soon be posting a video of a muscle biopsy and contracture test for MH that was recorded at the biopsy center at Wake Forest School of Medicine with the assistance of Dr. Joe Tobin. We are excited to develop and present these activities, but of course they require funding. Fortunately, our expert hotline consultants and members of our professional advisory committee donate most of the professional development.
We have also been holding annual patient/provider conferences. For example, over 100 operating room and recovery room nurses attended the most recent one in
One of the serious challenges in managing MH is preparation for an event in a non-hospital setting such as an office operating suite or surgery center. Almost half of all surgical procedures are conducted in a non-hospital setting. When MH occurs in such a setting, the response has to be different than in a hospital setting. In general, there are fewer people to assist in the care of the patient. Expert consultants are generally not on hand. Often equipment to perform laboratory studies is lacking and certainly there is no intensive care unit. We are all aware of the tragic death of Stephanie Kuleba in March of 2008 while undergoing surgery in an office operating room. One of the issues that has arisen from this and similar deaths and close calls is the absolute need for a protocol and guideline for transfer of care from the ambulatory setting to the hospital.
When should the patient be moved? Who should accompany the patient? What equipment and supplies should accompany the patient? What about preparation of the emergency department (in the receiving hospital) to deal with an MH crisis?
As a result MHAUS is working with the Ambulatory Surgery Center Association to develop such a protocol. This will have implications far beyond the problem of MH.
Genetic studies of MH are revealing new aspects of the syndrome. Recent studies have clearly documented MH or MH-like crises in some patients who carry one of the MH mutations. These crises have occurred without anesthesia! We urgently need to know more about who is at risk and under what circumstances. This is a top priority for MHAUS and with your assistance we will be able to clarify the environmental risk factors for MH.
Our signature service, the MH Hotline continues to function at a high level. Our consultants handle hundreds of calls every year. The anesthesia community, surgeons, intensivists and nurses all use the hotline and have come to depend on the expert advice that is offered without cost by our volunteer experts.
These are but a few of the many activities of MHAUS. We are a small organization, but have made a big impact on the care of patients. However, in order to keep up these programs, develop others and continue to understand the reasons why patients develop MH and how best to treat the life threatening events, we need your help.
Finally, we do want to hear from you. Please feel free to contact the Dianne, myself or any of our staff to tell us what programs you would like us to develop over the short and long term.
I am sure your lives are busy and I know that you are approached by many worthy causes for support, so I do thank you for your attention and for your continued assistance in helping us make MH a problem of the past. For MHAUS, it’s all about the patient and patient safety.
Thank you.
Sincerely,
President, MHAUS
To become a member or to make a donation, please make checks payable to MHAUS and send to POB 1069, Sherburne, NY 13460.
Annual MH Susceptible Membership/Renewal Fee – $35.00
Annual Medical Membership/Renewal Fee – $50.00
New Elite Membership – $100.00 (automatically receive updated materials)
Lifetime Membership – $500.00
Additional contribution to continue the important work of MHAUS:
$1000 $500 $250 $100 $75 $50 Other: $__________
Please do not print my name in The Communicator:_________
My gift is in memory/honor of: __________
PS: If you wish to learn more about my views of MH and the role of MHAUS, please read my monthly blog. They are found on the MHAUS web site and the MHAUS cause page on Facebook.
In addition to sharing information about Malignant Hyperthermia with people you know, won’t you also consider helping people you don’t know learn about Malignant Hyperthermia; by becoming a member of MHAUS.
Members receive our quarterly newsletter, “The Communicator,” a 30% discount off all MHAUS educational materials, a membership card and new member kit, and a discount off the cost of the Molecular Genetics test from PreventionGenetics, LLC
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