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 Member Participants:
Kevin Lyons-Tarr Judy Paulette Tony Sanfilippo
Harsha Murthy Deborah Cook Melanie Marquez
Neil Horikoshi Bart Fisher Stephen King
Board Members Not Participating:
Stephanie Hamm William Shulevitz
Kathleen Weis - Incoming Executive Director of the Foundation
I. Call to order Kevin Lyons-Tarr
Mr. Lyons-Tarr, Chairman of the Board, noted a quorum of the Board was participating and on the call. The meeting was called to order at 7:06PM EDT.
II. Update on Executive Director transition Kevin Lyons-Tarr and Kathleen Weis
Mr. Lyons-Tarr welcomed Ms. Kathleen Weis to the call, and indicated the Board is very excited and looking forward to Ms. Weis leading the Foundation as its new Executive Director, to succeed the retiring John Huber. Mr. Lyons-Tarr indicated Ms. Weis had signed an employment agreement with the Foundation. Ms. Weis thanked the Board for its support and said she was excited to be joining the Foundation. Mr. Lyons-Tarr noted Ms. Weis’ official start date was July 16th, but she agreed to an informal visit to the Foundation’s offices on July 9th to say hello and introduce herself to the Foundation’s Staff.
Ms. Weis responded to questions from Board members and accepted their thanks and best wishes. Mr. Lyons-Tarr excused Ms. Weis from the conference call at approximately 7:15 pm. Ms. Weis disconnected from the conference call at that time.
III. Approval of Minutes of November 15, 2014 meeting
Mr. King noted a few minor grammatical corrections to the draft minutes circulated prior to the current Board meeting. Harsha Murthy moved to accept the November 15, 2014 meeting minutes with the minor grammatical revisions Mr. King suggested. The motion was seconded by Ms. Paulette and approved unanimously.
IV. Approval of Audit Report
Audit was completed with a clean management letter. No issues to report. Messrs. Lyons-Tarr and Sanfilippo noted the Foundation’s audited financial statements were in very good shape. Mr. Murthy moved for the Board to accept audit; the motion was seconded by Mr. Horikoshi; and the resolution to approve and accept the audit was passed unanimously.
V. Financial Report
Mr. Sanfilippo presented the financial report previously distributed to the Board members. He stated the Foundation is in very strong cash position, minor variations - individual contributions are slow and some is seasonal fund raising where events happen at specific times during the year. Some surplus in salaries due to staffing. These numbers are through May. Mr. Sanfilippo then presented the performance reports for the Foundation’s investment portfolios. Messrs. Sanfilippo and Murthy said the Board should be pleased to see how strong the Foundation’s portfolios have performed and the good cash position maintained by the Foundation. We have realized a slight gain in a rather flat market. Various Board members thanked Mr. Sanfilipo for his stewardship of the Foundation’s Finance Committee and investment portfolios.
VI. Program Report
Mr. Huber presented the Executive Director’s Program Report. We have six new research grants, two in each of the three disorders; MDS, AA and PNH. We are supporting a total of 12 research grants. Through the Matthew Debono Memorial Scholarship Fund, we have awarded $21,000 in one and two thousand dollar scholarships. The two $5,000 Summer fellowship programs were awarded in May.
The Online Learning Center has been updated and re-launched. User will experience improved search capabilities and overall better usability. Standing up for Your Health continues to be an excellent tool for the Foundation. We created a generic rare disease version while working with NORD, who is using it. Seven more organizations and 2 pharmaceutical companies have contacted us and are interested in adopting the program.
Insofar as this was Mr. Huber’s last Board meeting as Executive Director and last opportunities to speak to the Board as a group, he thanked the Board for its support, care and confidence, and its focus on “staying strategic” as a Board. He said the Board had done outstanding job focusing on strategic planning and not managing the Foundation. Mr. Huber appreciated the great insight into life working with the Board.
On behalf of the Board and Foundation, Mr. Lyons-Tarr thanked Mr. Huber for his service, hard work and for a great career. Our job as a Board has been made easier due to Mr. Huber’s management. Those Board members and Staff who were there in the early days can see how far the Foundation has come, and it has done so under Mr. Huber’s leadership.
VII. Executive Session
Mr. Huber was excused from the conference call as The Board went into Executive Session.
VIII. Adjournment: There being no new or other business, the Board meeting was adjourned at 8:20PM EDT.
Stephen King, Board Secretary