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 2009 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 This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

The first board meeting was held February 7, 2009 in Raleigh-Durham, North Carolina, home of the National MPS Society.   

• Approved the appointment of Austin Noll as new board member.
• Discussed policy of stock sales and plans to explore financial planning and investment opportunities with an investment company.
• Hosted speaker, Gail Perry, Ambassador of local Fundraising chapter in North Carolina and reviewed committee goals, fundraising development, Board focus, Governance and staff work associated with policy making.
• Presented Executive Director and departing Development Director reports to the board.
• Announced completion of the Anesthesia booklet and fact sheet publications.
• Announced website redesign will begin in 2009.
• Approved family subsidies for attending the Disney conference that includes two complimentary hotel nights and a thirty percent discount on park tickets.
• Approved Thank you Note Policy and Board member pledge forms.
• Approved funding allocation for General research, MPS II, MPS III, ML and one time grant with the LSD network in the 2009 operation's budget.
• Approved 2009 budget.

The second board meeting was held June 6, 2009 in San Diego, California

• Welcomed Terri Klein, new Development Director.
• Discussed investments, diversification, bank fees and audit procedures.
• Updated board on 2010 Family conference at Knott's Berry Farm in California.
• Announced that a Charitable Solicitation Licensing program is recommended by the Fundraising committee and will be implemented by the Development Director.
• Presented 5 submitted grant proposals in the 2nd quarter of 2010.
• Discussed with the board that additional targeted solicitation reports will be generated using Donor Perfect for developing and tracking funds.
• Presented recommendation for Joint Fundraising Policy to the board for governing fundraising events that benefit more than one nonprofit.
• Discussed the following Fact Sheet reviews and edits: Uses of Developmental Testing, Orthopedic, Otitis Media, IEP Tips for Parents, and Pain Management. 
• Announced that the Seizure Fact Sheet is complete.
• Announced that a commitment was made with Mark Rowe for the 2009 website redesign.
• Results shared with the board that 20 CED scholarships and 20 conference scholarships were awarded by our Family Support Committee to members in 2009.
• Announced that $303,000 has been allocated to Family Assistance programs.
• Presented by the Technical committee, 33 letters of intent for research proposals received, committee made 12 offers, and 11 were submitted.  
  
• Discussed formal announcement for the MPS II clinical trials and determined this cannot happen until all legal and regulatory issues are resolved.
• Approved Equal Employment Policy.
• Approved Investment Policy.
• Approved Pharmaceutical Policy.
• Approved T-Shirt Policy for Fundraising and Walk/Run events.
• Approved adhoc Governance committee document and statements: Have the Desirable Qualities for Board Member, Board Culture Statement, and Board Nomination Process Statement.

The final board meeting was held December 17, 2009 in Orlando, Florida during our 23rd Annual Family Conference

• Welcomed new board members, Gordon Wingate and Jennifer Clarke.
• Discussed CD and Investment options with Austin Noll and Gordon Wingate to follow up with quarterly reports. 
• Received Dr. Kakkis's final installment for the endowment.  This completes the endowment commitment.
• Announced that LSD rare disease clinical network approved a $5 million grant (19 grants).  This grant requires advocacy group involvement.
• Discussed global online community in development with MPS III as one of the targeted diseases.
• Presented NIH meeting highlights that included importance of natural history studies, impediments of clinical trials, and update on newborn screening with inadequacies in screening available for MPS inclusion.
• Presented current year to date fund development margins with targeted solicitation report.
• Discussed Top Donor onsite meetings.
• Discussed Walk/Run breakfast will now include all Fundraising events throughout the year for recognition.  This tradition will continue in subsequent years.
• Announced that nine fact sheets have been updated for use and the ML II/ML III booklet is now complete.  All booklets are now branded.
• Announced that the Education and Publicity committee is producing and editing a thorough membership survey.
• Announced that the International MPS website will be integrated and hosted by the National MPS Society host.
• Presented to the board that 2 Extraordinary Experience recipients were awarded for an SAT prep class and high school band camp.
• Announced 11 grants were awarded for medical durable goods, averaging $1,445 in 2009.
• Discussed in detail the goals and board development plan for the Governance committee.
• Discussed the 2010 CYCLE conference that will be held in Los Angeles, California.
• Presented board duties and jobs for the Disney conference.
• Approved adhoc Governance committee to be a standing committee in 2010 with no change in committee members.
• Approved amendments to Board Travel Policy.