Myasthenia Gravis Foundation of America, Inc. Board of Directors Meeting Minutes October 3-4, 2012 Orlando, Fl.

Transcription

1 Myasthenia Gravis Foundation of America, Inc. Wednesday October 3, 2012 Board of Directors Meeting Minutes October 3-4, 2012 Orlando, Fl. Roll Call: Present: Sam Schulhof William J Sauerwine Jennifer Faucett Susan Klinger Wilma Koopman Ed Walsh Marcia Lorimer Jeff Pilgrim Gil Wolf Denise Rossi Robert Ruff Suzanne Ruff Nancy Kuntz Allan Weiss Janet Myder Carl Hansson Charlene Hafer-Macko Present via Phone: Jurgen Venitz Excused: Arthur Sultan Nancy Law Steve Hawco Staff: Tor Holtan Call to Order: The meeting was called to order at 2:03 pm Eastern Time on October 3 rd, 2012, in Orlando, FL. Opening Remarks: Chairman, Sam Schulhof, excused Board members Nancy Law, Steve Hawco and Arthur Sultan Chairman, Sam Schulhof, reported that Judy Bodner had resigned from the MGFA Board due to her work schedule. Motion: to approve the consent agenda as submitted. o First: Marcia Lorimer o Second: Susan Klinger Appointment of New Board Member Motion: to appoint Carl Hansson to the MGFA Board for the unexpired term of Judy Bodner.

2 First: Charlene Hafer-Macko Second: Ed Walsh The meeting was adjourned at 5:35 pm Thursday October 4, 2012 The meeting was reconvened at 8:36 a.m. Roll Call: Present: Sam Schulhof William J Sauerwine Jennifer Faucett Susan Klinger Wilma Koopman Ed Walsh Marcia Lorimer Jeff Pilgrim Gil Wolf Denise Rossi Robert Ruff Suzanne Ruff Nancy Kuntz Allan Weiss Janet Myder Carl Hansson Charlene Hafer-Macko Gil Wolfe Present via Phone: Jurgen Venitz Excused: Arthur Sultan Nancy Law Steve Hawco Staff: Tor Holtan Financial Reports 2012 Year to Date Financials and Full Year Projections Ed Walsh discussed these reports. Investment Portfolio Performance Motion: to advise the Investment Committee to combine the unrestricted and restricted portfolios. First: Carl Hansson Second: Robert Ruff

3 Motion: to allow the Investment Committee the flexibility to move into preferred as an investment strategy with no action to be taken until after the November national election. First: Carl Hansson Second: Allan Weiss Financials 2012 Year to Date and Full Year Projections Motion: to approve the financials as submitted subject to audit o First: Carl Hansson o Second: Bill Sauerwine Minnesota Charitable Solicitation Registration Motion: to accept the conditions set for Board oversight by the state of Minnesota for filing Minnesota Charitable Solicitation Registration. o First: Carl Hansson o Second: Susan Klinger Old Business Operations Audit: The Co-chairs of the Audit Committee reported on a meeting with, the Finance Committee and the MGFA CE to review database processes and policies. It was mentioned that polices are in place and are managed by the New York National Office staff. Patient Registry: Motion: to authorize Sam Schulhof and Tor Holtan to move forward with the Patient Registry Agreement subject to a positive legal opinion by the MGFA pro bono council and with the insertion of the clause: Any use of the registry must be approved by the M/SAB Research Committee. o First: Jurgen Venitz o Second: Susan Klinger Great Lakes Chapter MG Walk

4 Motion: to ask the EW Group to forgive a full or partial walk fee of the second $11,000 charged against the Great Lakes Walks with MGFA covering any difference. o First: Jennifer Faucett o Second: Marcia Lorimer MG Walks Contract The Board suggested that the MG Walk ad hoc committee should look at the following: o 2013 Negotiate a contract with a 2:1 cost ratio o 2014 and onward: Get competitive bids via a RFP Determine if managing the walks in-house is cost efficient The MG Walk ad hoc committee members are: o Ed Walsh o Bill Sauerwine o Carl Hansson o Sam Schulhof o Denise Rossi o Tor Holtan Conflict of Interest Policy Jeff Pilgrim updated the Board on the Audit Committee s review of the current Conflict of Interest process. Recommendations will be presented at the February MGFA Board meeting. North American Chapter This was not discussed due to the absence of Steve Hawco. New Business Funding For Ongoing GWAS Study The Weinrib bequest received by the National Office restricted to the GWAS study, will be sent to Dr. Drachman AANF Fellowship It was reported that the National Office is working with AANF to determine how much of the $52,500 grant will be refunded to MGFA as a result of Dr. Jiang not being able to continue the research as initially laid out in the application.

5 The National Office will discuss with AANF as to which next grant cycle (2013 or 2014) MGFA can partner with them. Shoe Dazzle Jasmine Snow s Seventeen magazine presentation of Shoe Dazzle was viewed. One hundred percent of the profits will go to MGFA starting in November. The Courage Within The Board recommended going forward with the proposed relationship regarding this documentary film and that an attorney should review the proposal. Clinical Practice Guidelines The final draft is now in the hands of AANN s editorial board. The final product will be featured on both the MGFA and the AANF websites. International Symposium Dr. R. Ruff gave a report on the very successful International Symposium that took place in New York City May The conference was attended by a record 300 researchers and clinicians from throughout the world. A second day of poster sessions had to be added due to the high number of poster submissions (120). The next International Symposium will take place in Physician Referral List Dr. Gil Wolfe updated the Board on the list. Chapter Affiliation Agreement Motion: to form a subcommittee consisting of chapter leaders and MGFA National Board members for the purpose of developing and strengthening support on the local level. o First: Jennifer Faucett o Second: Marcia Lorimer. It was agreed that at the 2013 February MGFA Board/Strategic Planning meeting, the major focus will be to look at the current structure of MGFA for the purpose of making a recommendation to the General Assembly in May 2013 with respect to changing the structure as appropriate to ensure that MGFA is sustainable and capable of delivering on its mission.

6 M/SAB Dr. Gil Wolfe updated the Board on issues discussed at the M/SAB Board meeting It was agreed that the National Office would check with the National Health Council to see if any of their member organization have policies dealing with the leadership of their medical advisory board being employed by a pharmaceutical company. Wateroak Advisors Christopher Hylen of Wateroak Advisors gave a presentation on the services offered, focusing on alternative investment strategies. Committee Recommendations Chapter Relations Committee It was reported that the Ohio Chapter has now been dissolved. The National Office is working with the Chapter during the transition and will reach out to the support groups. It was reported that the Alabama Chapter Board has voted to dissolve the Chapter effective end of October. The reasons given were that it has become more difficult to find new board members and bring in new volunteers to help run activities. Facebook It was agreed that MGFA develop a business page on Facebook in addition to the group page that currently is in place. It was agreed that a brief paragraph would be inserted to address the misinformation and misunderstanding. Communication Committee 2013 June Awareness Program The Communication Committee has been seeking input for what to do next year from both the Chapter Relations and the Outreach Committees. Members from the three committees will work together to come up with plans for next year. Website Linkage Policy Motion: to approve the Communication Committee Recommendation that the MGFA will review each request and

7 determine a response on an ad hoc basis. This will be done by Communication Committee members. Copyright and Trademark Policy Distribution The chapters will be reminded by the National Office one month prior to receipt of their annual questionnaire that the questionnaire will ask for written attestation that they monitor compliance with Copyright and Trademark Policy. Bylaws Policies Procedures Committee Grant Review Process (M/SAB and MGFA Board) Motion: to approve the Bylaws Policies & Procedures Committee policy recommendation on grant review process. The MGFA Board grant review subcommittee members are: o Jurgen Venitz o Robert Ruff o Allan Weiss Board Self-Assessment Discussion was tabled. Sam Schulhof advised Board members to engage in searching for and recommending new Board members. The meeting was adjourned at 4:21 pm Eastern Time on October 4th. Respectfully submitted, Janet A. Myder, Secretary