Myasthenia Gravis Foundation of America, Inc. Board of Directors Meeting Minutes April 25, 2012 Las Vegas, NV Present: Sam Schulhof William J Sauerwine Jurgen Venitz Jennifer Faucett Susan Klinger Wilma Koopman Ed Walsh Jeff Pilgrim Charlene Hafer-Macko, M.D. Present via Phone: Arthur Sultan Marie T Ronnlof Marcia Lorimer Allan Weiss, MD Nancy Kuntz, M.D. Excused: Zaeem Siddiqi, M.D Steve Merusi Gil Wolf, MD, Nancy Law Steve Hawco Judy Bodner Robert Ruff,M.D. Suzanne Ruff, PhD Staff: Tor Holtan Guests: Jim LoVecchio Denise Rossi Call to Order: The meeting was called to order at 8:13 am Pacific Time, in Las Vegas, NV. Opening Remarks: Chairman, Sam Schulhof, excused Board members Judy Bodner, Steve Merusi, Zaeem Siddiqi, M.D., Gil Wolf, M.D., Nancy Law, Steve Hawco, Robert Ruff, M.D., Suzanne Ruff, PhD Chairman, Sam Schulhof introduced the guests Jim LoVecchio, Chair of Jim L. Walker, Arizona Chapter and Denise Rossi a nominee to the MGFA Board. Adjustments to Agenda: ITMIG Walgreens request to have a raffle at their exhibit table in Las Vegas
Motion: to approve the consent agenda as submitted. o First: Bill Sauerwine o Second: Jurgen Venitz Financials 2011 Year End/2012 Budget/2012 1 st Qtr. Motion: to approve the financials as submitted subject to audit. o Second: Susan Klinger 2012 1 st Qtr. Investment Portfolio Performance Treasurer, Ed Walsh reviewed the 2012 1 st qtr. performance of the MGFA Investment Portfolio. Old Business 2012 MG Walk Update The 2012 MG Walks commenced last weekend in five sites in Florida and in New Orleans. It appears that the Florida results will be a little shy of the 2011 results while New Orleans, a first year site, did very well at $25,428 in pouring rain. 2013 MG Walks Motion: to approve the EW Group proposal as submitted ($1,500 monthly May September) covering the preparation of the early 2013 MG Walks. o Second: Ed Walsh 2012 International Symposium The 2012 International Symposium is taking place May 21-23 at the New York Academy of Sciences. To date 211 people have registered; still somewhat short of the 250 objective. This gap is expected to close as we get closer to the conference date. The sponsorship has so far exceeded the budget by 25%. Negotiations with a couple potential of sponsors are still going on.
2014 National Conference Locations Kellen Meetings are seeking hotel proposals from the following areas for the 2014 National Conference: o Boston, MA o Charleston, SC o Pittsburg, PA o Philadelphia, PA o White Plains, NY Website Update Sam Schulhof updated the Board on the two website projects: Content Changes, Content Display and the Support Group Calendar. The Content project should be completed this summer. Patient Registry The Master Agreement is currently with UAB for their comments. An update meeting will take place with Gary Cutter at the International Symposium next month in NYC. Gary Cutter will present the status of the project at this year s National Conference. Benefits to Chapters of MGFA Membership. The Board was asked to give Sam Schulhof comments to the List of Benefits by May 11. Trademark During the trademark filing for the MGFA logo, the examiner has requested a clarification as to the types of closely related disorders that should be included in the filing. The M/SAB will be asked to provide a list which will be presented to the Board. Physician Referral List The Board was asked to provide comments regarding how the list should be used to Marie Ronnlof. Sam Schulhof to ask Gil Wolfe for his point of view. Marie Ronnlof to put a Physician Referral List recommendation together for the October MGFA Board meeting. RFA and Grant Review Process Jurgen Venitz to send his draft copy of the review process to Marie Ronnlof. The revised draft to be sent to Gil Wolfe for M/SAB comments. The following MGFA Board Grant Review Process subcommittee was selected: o Wilma Koopman o Charlene Hafer-Macko o Bob Ruff
o Jurgen Venitz This subcommittee will present the projects along with M/SAB s rating/comments of the submissions to the MGFA Board. The final RFA Grant Review process will be presented to the Board at the October meeting. New Business ITMIG (International Thymic Malignancy Interest Group) Collaboration It was agreed to collaborate with ITMIG. Henry Kaminski will lead this effort. Walgreen s request to hold a raffle It was agreed that this is a Walgreen s event, not an MGFA event and therefore no action was needed. NHC Request for Support of Health Care Reform Act Motion: to go back to NHC letting them know that we can support a document that consists of the first paragraph only. o Second: Marie Ronnlof 2011 Audit Beth Ulbrich, the MGFA auditor, reviewed the 2011 MGFA Audit in detail. Motion: to accept the 2011 MGFA Audit as presented. o Second: Jennifer Faucett Grant Writing Proposal Motion: to move forward with the initiative and to negotiate a shorter term contract which will be brought to the Board/ Executive Committee for approval. o Second: Susan Klinger MGQOL15 and MGADL App for Smart Phones It was agreed that Denise Rossi and Steve Hawco will review the two proposals and come back to the Executive Committee with a recommendation of which one to move forward with. Conflict of Interest The revised Conflict of Interest form will be available for the October Board meeting
MGFA 60 th Anniversary A special 60 th Anniversary issue of Foundation Focus will be sent out in June. Other items made for the 60th Anniversary include; banner on the MGFA stationery and on the website, an anniversary polo shirt as well as special anniversary stickers to be put on envelopes for all mailings. MG Golf Tournament The 2012 MG Golf tournament will take place on December 3 rd with the gala dinner and silent auction on Saturday December 1 st. 11 teams have already committed to play. A conversation is underway regarding a potential MG Golf tournament in Milwaukee in 2013. 2012 RFA Proposals Motion: to award a grant of up to $50,000 for the Nicotinic Acetylcholine Receptor PET Radiolabeling in Patients with Myasthenia Gravis proposal by Hans Katzberg. o Second: Jennifer Faucett Board Self-Assessment Survey Tor Holtan reviewed in detail the results of the 2011-2012 Board Self- Assessment Survey to include a comparison to the 2010 2011 results. MGFA Board Elections Motion: to approve the slate of the re-election of Marcia Lorimer and Robert Ruff and the election of Denise Rossi to the MGFA Board. o Second: Allan Weiss Board Members It was agreed that Susan Klinger would draft a letter for Sam Schulhof 's signature to Board members Judy Bodner and Steve Merusi to inquire about their commitment to Board. Their response will be required by May 15 otherwise they will automatically be terminated from the Board. Committee Recommendations Chapter Relations Committee Alabama Chapter Motion: to approve the Chapter Relations Committee recommendation that the Voting Members restore the chapter to good standing together with all rights, benefits and responsibilities.
Nutmeg Chapter the Voting Members grant an exemption from the provisions of probation to allow the chapter to continue to receive referrals from the national office and the chapter be allowed to maintain its website link. Nutmeg Chapter Motion: to approve the Chapter Relations Committee further recommendation that the voting members restore the chapter to good standing with all rights, benefits and responsibilities. Georgia Chapter the Voting Members grant an exemption from the provisions of probation to allow the chapter to continue to receive referrals from the national office and the chapter be allowed to maintain its website link. Georgia Chapter Motion: to approve the Chapter Relations Committee further recommendation that the voting members restore the chapter to good standing with all rights, benefits and responsibilities. Greater St. Louis Chapter the Voting Members take no action in connection with the probationary status of this chapter which will result in the revocation of the chapter s charter. Ohio Chapter the Voting Members grant a three month extension of probation (through July 26, 2012) in which to bring current all outstanding assessments due, in addition to compliance with all provisions of the Bylaws, Policies and Procedures. In the event all outstanding assessments to date have not been paid in full or all other provisions of the Bylaws, Policies and Procedures have not been met prior to July 26, 2012; the chapter s charter is revoked, requiring no further action of the Voting Members.
In the event all provisions of the extension have been met prior to the July 26, 2012 date, the Chapter Relations Committee recommends that the chapter be restored to good standing with all rights, benefits and responsibilities. Maryland/D.C./Delaware Motion: to accept the recommendation of the Chapter Relations Committee that the probation will be extended by12 months until the next annual meeting of the Voting Members. The meeting was adjourned at 5:10 pm Pacific Time. Respectfully submitted, Janet A. Myder, Secretary