Myasthenia Gravis Foundation of America, Inc.
Board of Directors Meeting Minutes
January 28, 2012
Tampa, FL
Present: Sam Schulhof Allan Weiss, MD Nancy Law
Janet Myder Marcia Lorimer Marie T Ronnlof
Jennifer Faucett Susan Klinger Steve Hawco
Wilma Koopman Nancy Kuntz, M.D. Robert Ruff, M.D
Suzanne Ruff, PhD Jurgen Venitz
Charlene Hafer-Macko, MD
Present
via Phone: Arthur Sultan Ed Walsh
Excused: Zaeem Siddiqi, M.D Steve Merusi Gil Wolf, MD,
Jeff Pilgrim William J Sauerwine Judy Bodner
Staff: Tor Holtan
Call to Order:
· The meeting was called to order at 8:03 am Eastern Time, in Tampa, Fl..
Opening Remarks:
· Chairman, Sam Schulhof, excused Board members Judy Bodner , Steve Merusi, Jeff Pilgrim, William J Sauerwine, Zaeem Siddiqi, M.D and Gil Wolf, MD.
Adjustments to Agenda:
· None
· Motion: to approve the consent agenda as submitted, along with changing the September 14-15, 2011 Board meeting attendee list in the minutes .
o First: Jurgen Venitz
o Second: Marcia Lorimer
· Result: Approved
Financials
2011 YE - Preliminary
· The 2011 Year End preliminary financials were reviewed by the Board.
2012 Budget
· Motion: to approve as presented the Finance Committee’s recommendation for the 2012 Budget.
· Results: Approved
2011 FY Investment Portfolio Performance
· Treasurer, Ed Walsh reviewed the 2011 performance of the MGFA Investment Portfolio. The 2011 yield was $110,641 (2.388%)
Cummings
· Motion: move the previously segregated 2010 Cummings gain of $161,000 out of Cummings and allocate it to temporary restricted to be used for 2012 research projects.
o First: Marcia Lorimer
o Second: Jurgen Venitz
· Result: Approved
· Motion: to approve the Finance Committee’s recommendation to terminate Davis as an asset manager.
· Result: Approved
· Motion: to approve the Finance Committee’s recommendation to reinvest the non-traditional investments and the assets managed by Davis into the Prime Income Portfolio.
· Results: Approved
· The Finance Committee was asked to make a recommendation to the Executive Committee for the “Board restricted funds” budget line, providing more flexibility to the Investment Advisor (RBC) for these funds.
Old Business
MG Walk Update
· The 2011 MG Walk results were reviewed during the review of the 2011 YE financials and the 2012 Budget. The 2011 MG Walk gross revenue was $418,000.
· Motion: to ratify the 2012 MG Walk contract with the EW Group.
o First: Jurgen Venitz
o Second: Charlene Hafer-Macko
· Result: Approved
· It was agreed that the National Office would provide the MGFA Audit Committee copies of any request for proof of insurance by the MG Walk sites.
· The 2012 MG Walk profit share calculation schedule was reviewed with the Board. The schedule will be provided to all MG Walk participating chapters.
MG Golf
· MGFA’s first national golf tournament was held on December 5th at the Golden Bear Club, Keene’s Point, Windermere, Fl. with $26,975 in gross revenue. There are already 11 foursomes (sponsors) committed to the 2012 tournament.
Benefits to Chapters of MGFA Membership
· Sam Schulhof reviewed a list of the benefits to chapters of MGFA membership. Tor Holtan to send the list to the Board members for their additional comments and input.
Website Update
· Steve Hawco presented planned updates for the website to include: Content Changes, Content Display and Support Group information. Steve Hawco will be supported by Janet Myder and Nancy Law on this short term project.
International Symposium
· Bob Ruff gave an update of the May 2012 International Symposium to be held in New York City in conjunction with New York Academy of Sciences.
New Business
MGQOL15 & MGADL App for Smart Phones
· Dr. Ted Burns is developing MGFA “app” for MGQOL15 & MGADL.
Drug Shortages
· Dr. Charlene Hafer-Macko gave the Board a presentation on the issue of an increased shortage of drugs available for certain medical procedures and components for specific drugs. She also highlighted how her institution is dealing with this.
· Sam Schulhof and Tor Holtan to inquire about this issue among the other disease groups and NHC when attending the National Health Council meeting February 8-10.
· Jurgen Venitz, Charlene Hafer-Macko, Robert Ruff and Allen Weiss to review how the drug shortage could potentially impact the MG patients.
2011 Audit Engagement Letter
· Motion: to authorize the signing of the 2011 Audit Engagement letter as presented.
o First: Marcia Lorimer
o Second: Jurgen Venitz
· Result: Approved
· Tor Holtan to request the Consolidated Engagement letter from the auditors.
Database Development
· An ad-hoc committee has been established to evaluate the migration to one national database. The committee members will be Steve Hawco, Steve Merusi, Sue Klinger, Marie Ronnlof and Jennifer Faucett. The committee will also propose a work flow and service agreement.
Conflict of Interest
· Marcia Lorimer reviewed the status of signing of the Conflict of Interest (COI) forms. It was agreed that signing of the COI should be expanded beyond the MGFA Board, M/SAB and NAB members to include key vendors.
· It was agreed to ask the pro bono council to determine if the current COI form needs updating.
Insurance Policies
· It was agreed that any request for proof of MGFA insurance by a chapter or a MG Walk event should be communicated to the Audit Committee.
· The National Office will request from the insurance broker a risk assessment analysis of the MGFA policies.
Committee Recommendations
Resource Development Committee
2011 Donation Analysis
· Tor Holtan updated the Board on 2011 fundraising statistics for both on-line and snail mail activities.
· The analysis proved that the MG Walk donors are almost all new to MGFA with hardly any “cannibalization.”
Bylaws Policies Procedures Committee
Chapter Affiliation Agreement
· The Board agreed to further develop a Chapter Affiliation Agreement which clearly lays out both Chapter and MGFA responsibilities. Pro bono Counsel to draft an agreement for Board to review at the next meeting.
Physician Referral List
· An ad-hoc committee was established with all the MGFA Board members who also are members of the M/SAB to set criteria/process identifying physicians to be on list of “neurologists who are seeing MG patients”.
Grant Review Process Policy (M/SAB and MGFA Board)
· Marie Ronnlof to send the Grant Review Process document to the full MGFA Board. The Board will send any comments to Marie Ronnlof.
Communication Committee
Trademark and Copyright Policy Compliance and Monitoring Procedures
· Motion: to approve the recommendation of the Communication Committee as presented in the draft MGFA Trademark and Copyright Policy (TM&CR) Compliance Monitoring Procedures.
· Result: Approved.
Medical Alert Cards
· The list of medicines on the Medical Alert Card should be renewed and updated by M/SAB and subsequently reviewed annually by same group.
Website Analytics
· It was agreed that the Communication Committee would devise a short survey to be used on the MGFA website. The objective of the survey is to gain information in terms of levels of satisfaction and demographics.
Board Development Committee
· Sue Klinger updated the Board on the status of the current Board nomination cycle. To date, we have not received any nominations from the chapters.
· Sue Klinger reviewed with the Board a Chapter Recruitment & Orientation Program that is currently being developed.
Adjourn:
The meeting was adjourned at 4:00 pm Eastern Time.
Respectfully submitted,
Janet A. Myder, Secretary