MISSION: The Aplastic Anemia & MDS International Foundation (AA&MDSIF) is an independent nonprofit organization whose mission is to support patients, families, and caregivers coping with Aplastic Anemia (AA), Myelodysplastic Syndromes (MDS), Paroxysmal Nocturnal Hemoglobinuria (PNH), and related bone marrow failure diseases.
Board Members Participating:
Kevin Lyons-Tarr(Chairman) Stephen King(Secretary) Stephanie Hamm
Harsha Murthy (Vice Chairman) William Shulevitz Melanie Marquez
Tony Sanfilippo(Treasurer) Neil Horikoshi
Kathleen Weis (CEO & Executive Director)
Board Members Not Participating:
Judy Paulette Bart Fisher
I. Call to Order Kevin Lyons-Tarr
Mr. Lyons-Tarr, Chairman, noted a quorum of the Board was participating and on the call. The meeting was called to order at 7:05PM EDT. Mr. Lyons-Tarr thanked Board members for joining the call and welcomed Kathleen Weis to her first Board meeting in her official role as the Foundation’s CEO and Executive Director.
II. Approval of June 30, 2015 Board Minutes Kevin Lyons-Tarr
Mr. Lyons-Tarr asked Board members for any revisions or comments to the minutes from the last Board meeting on June 30, 2015. Hearing no requests for revisions to the June 30th minutes, Mr. Lyons-Tarr asked for a motion to approve the minutes in the form submitted to the Board. Mr. Murthy moved to accept the meeting minutes as presented. A second was issued by Mr. Sanfilippo. The motion passed.
III. Mission Moment: Assisting a PNH Patient from South Africa Kathleen Weis
Ms. Weis stated that the “Mission Moment” is an effort to bring to the Board the excellent work of the Foundation. This will be an ongoing agenda item for all board meetings.
IV. CEO Report: Update Kathleen Weis
Ms. Weis has met with all Staff members, both on a department-by-department basis and individually to get their input and share ideas. Ms. Weis said she found these sessions to be productive meetings, allowing her to get a sense of process from the staff perspective. She and the Staff discussed what projects were important and ideas on which to work. Ms. Weis has also met with a number of key stakeholders including the Foundation’s partners and sponsors.
Ms. Weis went on to state she is reviewing the Foundation’s Human Resources' function. Mr. Murthy also recommended that the Foundation’s Employee Handbook be reviewed and revised. Ms. Weis stated she will be moving forward on other HR initiatives as well, instituting formal reviews and formal raises for staff. This is part of the work needed for employee/career development.
On the HR and personnel fronts, Ms. Weis reported that she had hired a new Chief Development Officer, Serap Akisoglu. She has extensive experience and has led both individual and corporate giving programs in previous positions quite successfully.
Turning to the Foundation’s overall outreach program, a review of the Foundation’s logo and website is underway. Ms. Weis will pass ideas on to the board in an attempt to accomplish three things; 1) distinguish the Foundation from the larger group of blood-related organizations, 2) educate people that the Foundation is focused as a bone marrow disease organization and 3) modernize the website’s look and feel. Ms. Weis may reach out to Board members to see if they can assist and be “beta” users for website testing.
V. Finance/Investment Committee Update Mr. Sanfilippo
Mr. Lyons-Tarr next indicated, that while the item was not on the agenda circulated to the Board prior to the Board meeting, Mr. Sanfilippo wished to update on the Board on the Foundation’s finances. Mr. Sanfilippo reviewed the recent volatility in the stock market, reminded the Board that the Foundation’s investment strategy was on long-term capital protection and appreciation and that the Foundation has consistently taken a conservative investment approach. Overall, he concluded, that the Foundation’s investments were in relatively good shape. Mr. Murthy added that, given there were very few higher-yielding alternatives in the fixed income (bond) or cash/Treasuries markets, the Foundation had little choice but to remain in the equities market.
VI. Chairman’s Remarks Kevin Lyons-Tarr
Resolution Recognizing PNH Walk Volunteers: Mr. Lyons-Tarr opened the Chairman's remarks by asking the Board to recognize the volunteers who will be participating in the September 20th PNH Walk in New York City. This walk is the 10th anniversary of the New York PNH Walk. Mr. Lyons-Tarr said that, in particular, the Foundation should recognize the efforts of five volunteers: Sara Higgins Raboin, Erin Darling Oliver, Marlena Connor, William Halvorsen and Linda Halvorsen. Mr. Murthy moved to formally adopt the following resolution:
We commend and celebrate the ongoing efforts of volunteers who have come together to support the PNH patient community by organizing the PNH Research and Support Foundation and working to help raise funds to further research and assist patients to access initial expert medical case review. Sunday, September 20, 2015 marks the tenth annual PNH Walk in New York City. We are especially grateful to:
Sara Higgins Raboin, Founder, PNH Research and Support Foundation
Erin Darling Oliver, Founder, PNH Walk (2004, Florida), Organizer, NYC logistics
Marlena Connor, Organizer, PNH Walk, NYC (2005)
William Halvorsen, Auction Co-organizer
Linda Halvorsen, Auction Co-organizer
for their dedication and enthusiastic efforts to make a lasting difference in the lives of patients, families and loved ones. Well done!
Ms. Marquez offered a second and the motion passed unanimously.
Board Composition and Qualifications: Mr. Lyons-Tarr also sought the Board’s reactions to questions about the composition and qualification of Board members. Mr. Lyons-Tarr said the Foundation generally needs to consider increasing the Board size and diversity in order to strengthen the Foundation’s ability to fulfill its mission.
Mr. Murthy noted that just as Board had found Ms. Weis, who had no “direct connection” to the Organization, there will likely to be others who could still make significant contributions to the Foundation’s Board. Mr. Lyons-Tarr stated the Board needs to analyze what skills are needed and whether it is time to expand the Board.
The Board's consensus was not having a "direct connection" to bone marrow failure diseases should not automatically disqualify a candidate from Board consideration provided the individual was committed to the Foundation's mission of patient service and brought other skills, experience and diversity to the Board.
VII. MDS as a Cancer – Discussion Kathleen Weis
A discussion ensued and it was agreed upon the Board needed the input of the Foundation's Medical Advisory Board as it is a complicated classification even among physicians. The discussion concluded with the Board agreeing to take up the matter for further discussion as Ms. Weis and Mr. Lyons-Tarr determine appropriate.
VIII. Other Business Kevin Lyons-Tarr
Mr. Murthy asked the Board be informed as soon as possible ad to the plans for former Executive Director John Huber’s retirement party which had been postponed. Mr. Lyons-Tarr said dates and venues were being explored and details would be forthcoming.
At 8:32PM EDT, there being no other business or matters to discuss, Mr. Lyons-Tarr issued a thank you to all in attendance and moved to adjourn. Mr. Murthy seconded and the motion passed.
Secretary of the Board of Directors