2013 BOD Minutes

The bylaws of the National MPS Society require that the board of directors meets three times each year.  Below is a general summary from those meetings; the complete meeting minutes can be obtained by calling the Society’s office.


The first board meeting of 2013 was held February 10th in Washington, DC.  The new board member orientation was presented for Carrie Dunn who joined the board January 1st.


  • Discussed the proposed 2013 budget and reviewed the 2012 financial inflows, comparing that to the 2012 budget and final outflows.
  • Discussed the investment process and potential alternative investment strategies.
  • Discussed moving unrestricted funds to 2012 research grants.
  • Discussed concerns regarding start delays of Genistein clinical trial and resulting delay of those funds being utilized (grant allocated in 2012.)  Board requested input from the SAB and a call with all the board to discuss utilization of funds.
  • Discussed benefits of board making annual fund calls and Terri’s personal outreach; 2012 annual fund increased 24%.
  • Discussed plans for MPS Awareness Day (Facebook contest, personal thank yous to researchers.)
  • Discussed preliminary plans for the 2014 40th anniversary celebration.
  • Discussed plans and coordination for the board’s visits to Capitol Hill February 11-12, 2013 and 2013 legislative advocacy agenda.
  • Discussed increasing the Continuing Education Scholarship Program to fund 25 $1,000 scholarships in 2013.
  • Discussed fundraising changes in 2012: decrease in total giving, sponsored walk/runs and Sponsor a Child for a Cure program, but increase in fundraising events and addition of Mobile Causes.
  • Discussed initiation of board member evaluation process


Approved decreasing the cash balance by moving $113,000 to research.

Approved creation of New Award of Courage for all individuals with MPS and related diseases.

Approved 2013 budget with the exception of the grants which were approved in a subsequent board conference call.

Approved the committee assignments.

Approved purchase of eTouch web based registration program.

Approved increase in conference registration fees from $175 to $200 for member adults and $250 to $350 for professionals.  No changes were made to fees for children (ages 3-12.)



The second board meeting was held June 29, 2013 in Dallas, TX.  Lisa Todd presented “What makes a dynamic groundbreaking nonprofit board?” as part of the board’s ongoing education and development.


  • Discussed the large planned giving gift generously provided to the Society and Terri’s extensive interactions with the donor to ensure the donor was satisfied with plans for the gift.
  • Discussion about the Society’s new videos focused on the positive feedback and how we can track effectiveness when shown in conjunction with fundraisers.
  • Discussed new events planned for annual Family Conference in San Antonio, including a party for parents, entertainment at the banquet.
  • Discussed inclusion at the family conference of the 10th Anniversary of Aldurazyme celebration, a luncheon at Morgan’s Wonderland for all conference attendees where the participants of the MPS I ERT clinical trials will honored.  All participants received invitations to attend the conference and luncheon with travel provided, thanks for a grant from Genzyme.
  • Kelly Rose, our administrative assistance, is leaving in July for graduate school.  Lydia Edgal was hired and will be trained by Kelly.
  • Discussed the help Terri continues to need with grant research so her time is effectively used with writing grants.
  • Discussed strategies to increase the walk/runs through a call campaign, the need for the board to become active with fundraising, and results of the fundraising survey was presented.
  • Discussed need for a fundraising fact sheet which the education/publicity committee will prepare.
  • Discussed the importance and effects of responding to legislative Action Alerts.
  • Discussed the option of increasing the board size; bylaws allow for 15 (current board size is 13.)
  • Discussed the investment committee’s goal of increasing return on investment and plan to do so while maintaining an acceptable amount of return for risk.


Approved the 2013 grants awarded with the exception of MPS IV and MPS VI.  A second grant announcement will be made July 1st for those grants.

Approved timeline for board election process.



The final board meeting of the year was held in conjunction with our annual Family Conference in San Antonio, TX on October 24, 2013.  The newly elected board members, Amber Mongan, Erica Blight and Jerry Todd, whose terms began January 2014, joined this meeting to become acquainted with the workings of the board.


  • Discussed the November FDA Advisory Committee meeting for MPS IVA and the Society’s role preparing families to speak.
  • Discussed increasing collaboration with foundations and sister organizations.
  • Discussed increased in year-to-date revenue compared to this same time 2012 and expectation for year-end donations.
  • Discussed announcement of ML Partnership Grant with ISMRD.
  • Discussed hiring a part time employee to help Terri with administrative details, allowing her to focus on fundraising.
  • Discussed plan for all board members to have a Courage Page by the end of the year.
  • Discussed plan for 4th and final video, focusing on legislative advocacy.
  • Discussed plans for 40th anniversary gala and publicity about the 40th anniversary.
  • Discussed plans for the 2014 DC board meeting and subsequent Capitol Hill visits.
  • Presented Family Support grants and scholarships (education and conference) awarded to date totaling over $57,000.
  • Discussed the completed board evaluation process and interview process of candidates running for the board.

Approved funding the MPS IVA grant.

Approved returning $19,000 from MPS VI research back to general research funds because the MPS VI grant was not funded.  (In February the board approved allocating $19,000 from general research to MPS VI research so a robust grant could be offered.)

Approved board appointments to the governance committee.