The Board of Directors of the National MPS Society meets three times a year, as stated in the bylaws. This diligent group of dedicated members strives to fulfill the Society’s mission of finding a cure for MPS and related diseases. This overview of the 2011 meetings summarizes how your board is directing resources to efficiently and effectively support research and support individuals and families affected by MPS. A complete copy of the minutes can be obtained by contacting the office at 919.806.0101 or email directly to info@mpssociety.org .
The first board meeting of 2011 was held in February in Dallas, Texas where
Steve Holland, Mercedes Johnson and Donna Weaver
we welcomed new board members Jeff Bardsley, Stephanie Bozarth and Hope and Dave Madsen with the new member board orientation. The board meeting was preceded by a day of strategic planning led by Bill Bennington, who has been involved with the non-profit community for more than 40 years. He has provided training to 20,000 staff and board members from more than 4,500 charitable organizations in strategic planning, marketing, communications and board and organizational development.
- Discussed the 2011 budget, including the proposed grants to be awarded
- Discussed the rheumatology project, which is sponsored through Join the Search
- Discussed the success of the personal calls made by board members on behalf of the annual fund
- Discussed the success of the new SACFAC program which is associated with the walk/runs
- Discussed new fact sheets for 2012; diagnostic testing, transitions, government assistance, endocrine, HSCT for newly diagnosed families, advanced directive, plus a new section in Courage,: Outstanding Siblings, Children and Relatives (OSCAR)
- Discussed identifying a new software developer for our website which will enhance social networking, fundraising and education and allow for an online directory
- Discussed plans for the development of a Planned Giving campaign in 2011
- Discussed adding a legislative advocacy staff person
- Discussed 2012 appropriations language and plans for a May visit to DC
- Discussed the MPS video project to be launched thanks to a generous donation from Shire
- Approved adding Drs. Patti Dickson and Dr. Kathy Ponder to our Scientific Advisory Board
- Approved the Medical Travel Assistance Program, to help families needing to travel more than 200 miles one way to non-recurring medical appointments
- Approved a change to the FAP requirement from one grant per “membership” to one per “affected individual”
- Approved providing walk/run coordinators the option to allocate donations to syndrome specific research
- Approved edits to the Confidentiality, Office, and Employee Leave policies
- Approved the new Joint Venture policy
- Approved the 2011 budget and 2011 grant awards
The second board meeting was held July, 2011 in St. Louis, MO, prior to our
Anne & Tom Gniazdowski, Angela Guajardo and Jennifer Clarke
annual Family Conference.
- Discussed recommendation of working with a legislative consulting versus hiring a staff person; proposals from firms will be obtained, reviewed and two board members will talk with personnel from the firms
- Discussed the costs of including poster presentations at our conferences, to include funded researchers, given that many are from outside the U.S. and the cost/benefit
- Discussed the 2011 fundraisers and reaching out to families at the conference (new fundraising booth)
- Discussed budget with comparison of inflows from this time 2010, also a review of our CD ladder; the first annual fund mailing was sent in early July
- Discussed the materials developed for the Planned Giving program and program goals
- Discussed various fundraising options, e.g. texting a donation, FirstGiving, etc.
- Discussed MPS Awareness Day initiatives: Facebook contest and personal thank yous to the Scientific Advisory Board and researchers
- Discussed the Chase Community Foundation grant received
- Discussed plans to identify an auditor and insurance agent in North Carolina
- Discussed 2013 conference in San Antonio, TX and 2014 in Disney World
- Approved edit to MTAP to remove six month membership requirement
- Approved second year funding of 2010 grants and first year funding of 2011 grants
- Approved Dr. Calogera Simonaro to join the Scientific Advisory Board
The final board meeting of the year was held in Dallas, TX on November 12,
Dr. Kimberly Frye and Austin Noll
2011. The newly elected board members who terms began January 2012, joined this meeting to become acquainted with the workings of the board, Dawn Checrallah, Lisa Todd and Roy Zeighami. To expedite their first official board meeting in 2012, the received their Board Orientation at this meeting.
- Discussed the MPS I Newborn Screening Committee and plans to submit the application to committee in January, 2012
- Discussed information Barbara Wedehase presented from her International MPS Network meeting in Taiwan
- Discussed the budget, with a careful review of the inflows and expenditures and projected amount for the annual fund
- Discussed Angela taking over the filing of charitable solicitation licenses
- Discussed the MPS video, taping of families and professionals with goal of spring 2012 for completion
- Discussed sending New Year’s cards to members in place of holiday cards
- Approved the North Carolina insurance agent
- Approved changing the MTAP and FAP programs to calendar year
- Approved the 2011 election process
- Approved board member evaluation process
- Approved Stephanie Bozarth as Vice President
- Approved the strategic plan
