Board of Directors Meeting Minutes

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Myasthenia Gravis Foundation of America, Inc. Board of Directors Meeting Minutes January 23, 2009 Present: Wilma Koopman Steve Hawco Marc Kalish Marcia Lorimer Esther Land Nancy Law Marie T. Ronnlof Ron McFarlane Janet Myder Henry Kaminski, M.D. Sam Schulhof Louis Nemtsov Michael Klingman Excused: Susan Klinger Robert Ruff, M.D. Staff: Tor Holtan Emily Brochstein Ralph Vasami Call to Order: The meeting was called to order at 9:05 AM Eastern Standard Time, Tampa, Florida. Opening Remarks: Chairperson, Sam Schulhof, welcomed all to Tampa, Florida and the Board of Directors Meeting. Chairperson Schulhof reported that Richard Barohn stepped down 6 months early as Chair of MSAB as he could not attend this meeting. The next Board meeting is in 8 months so this move makes for a better transition. Dr Kaminski will assume the Chairmanship of MSAB as of this meeting. Chairperson Sam Schulhof, mentioned that Sue Klinger could not attend the meeting due to treatment earlier in the week. She would attend the Strategic Review Session via phone on January 24 th. Chairperson Sam Schulhof, pointed out that the Scientific Session is scheduled for October 7 th and the MGFA Board meeting on October 8 th in San Diego. Chief Executive Tor Holtan, introduced Emily Brochstein, the new Director of Chapter Relations and Ralph Vasami who would conduct the Strategic Review Session on January 24 th. Consent Agenda: Motion: to approve the consent agenda as submitted, including the Minutes of September 19, 2008 Board Meeting, Chief Executive Report, Finance Report, subject to audit, Committee Reports and Advisory Board Reports. o First: Marc Kalish o Second: Ron McFarlane A correction to Dr. Kaminski s name will be made on page 2 of the Minutes.

January 23,2009 page 2 of 5 Old Business: Quarterly Conference Calls with Chapters: o The Chapter conference calls are ongoing. Some are very enthused about the calls and some do not want to participate. o Some of the Chapter calls are on a 3 rd cycle and others on first. Fellowship/AANF Contract Proposal: o Motion: to authorize the execution of the AANF Fellowship contract First: Marcia Lorimer Second: Steve Hawco (Marc Kalish opposed.) o It was suggested that the National office communicate this program to the various MG communities. Plan for Annual Meeting CD Distribution: o The software to link the audio with the slides of last year s Annual Meeting has not been located. Inasmuch as the quality of the audio recordings are not of good quality, the National office will investigate transferring the 16 audio CDs to 1 DVD for distribution. They will also look for the slide presentations. o It was agreed that the National office would let the chapters know that the presentations are available, but are of poor quality. Scientific Sessions: o AANEM s abtract deadline is March 1 st. It is understood that MGFA will have its own deadline, but in order for the abstracts to be printed in Muscle & Nerve and Clinical Neurophysiology they must be ready for print by August 1 st. Chapter Training Program: o The first training session will be on the new 990 s and will be scheduled to take place the end of March. Assessments: o As of today only three chapters have not paid. Calls have been made to all of them. Annual Meeting Update: o The Carolina Chapter would like to support the meeting at some level. o Exercise programs will be expanded to both days. o Sam Schulhof, Marcia Lorimer, Wilma Koopman and Tor Holtan will meet to work on the agenda and speaker selection.

January 23,2009 page 3 of 5 o It was agreed to call it the National Conference rather than the Annual meeting. o It was agreed to investigate the cost of having the presentations recorded professionally. MG Awareness Month Update: o The National office will review last year s program and make recommendations. It was stressed that the Media Kit must be supported by a How to document. o The National office will evaluate a strategy with emphasis on key markets. Report on Holiday Appeal: o The National office will conduct analysis to determine if some of the bigger donations received in December came from the Holiday Appeal mailing list. Research Funds from Chapter: o The chapters have been requested to file a form by February 6th depicting how much restricted research dollars they hold. These funds, as per the bylaws, are to be transferred to the National office. New Business: Ratification of Kellen Contract: o Motion: to ratify the execution of the MGFA contract with Kellen. Bank Resolution to close Wells Fargo Accounts: o Motion: to authorize Kellen to close the Wells Fargo Accounts and for the appropriate officer of MGFA to sign off on the documents in order to accomplish the closing of these accounts. Ratification of opening up the Sun Trust Accounts: o Motion: to ratify opening the Sun Trust Accounts o Results: Approved. 2009 Budget: o Motion: to approve the draft 2009 budget as an interim operating budget subject to revision subsequent to the strategic planning

January 23,2009 page 4 of 5 session, and to authorize the Executive Committee to approve the 2009 budget subject to recommendation of the Finance Committee. o Results: Approved. 2008 Audit: o Tor Holtan will request electronic copies of the chapter audits and forward them to the Audit and to the Chapter Relations committees. Revenue Sharing/Credit Cards: o The Board approved the committee report of the inclusion of the following in the Policy and Procedures of MGFA: Ten percent(10%) of credit card revenue originating within a chapter s chartered and temporarily assigned terriotories shall be paid quarterly to the chapter and will not count toward the chapter s gross revenue for assessment purposes. Recommendation: Pricing of Professional Manual: o Motion: to set the price of the Professional Manual at $12.00 First: Marc kalish Second: Mike Klingman Tor Holtan to investigate if color graphs and pictures would be available for future reprints of the Professional Manual. The National office to evaluate if a press release should be done as part of the National Communication Plan for the Professional Manual. MGNet Broadcast of Annual Meeting: Tor Holtan to contact MGNet to determine how best we can work together to create some interactive sessions at the National conference. MA/NH Chapter Request to Execute CHC Application: Motion: the Chief Executive to send a letter to the chapter that can be attached to the application. The letter is to certify that the chapter does not have any paid staff. The Chief Executive is not authorized to sign a blank application and without certifications from the Chapter. This is in response to MA/NH Chapter s request that the Chief Executive execute a blank application certifying to various activities and day to day operations of the chapter. First: Marc Kalish Second: Mike Klingman MSAB Drachman Proposal:

January 23,2009 page 5 of 5 Motion: to approve the funding of Dr. Drachman s research proposal, conditioned upon the other funding sources also committing the funds; and delegating to the Executive Committee the power to impose restrictions and guidelines required for the funding, i.e., benchmarks. o First: Marc Kalish o Second: Marcia Lorimer Adjourn: The Meeting was adjourned at 3:00 p.m., Eastern Standard Time. Respectfully submitted, Marie T. Ronnlof, Acting Secretary