Board of Directors Election 2016

Welcome to the 2016 Board of Directors election process. Below is the application as well as supporting documents highlighting the Board of Directors position. Nomination applications are due September 14th. If you have any questions, please contact Mark Dant directly at or 919-806-0101.


2014 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 2014 was held February 23 in Washington, DC. The new board member orientation was presented for Erica Blight and Amber Mongan who joined the board January 1st. Dr. Tim Miller from Abeona Therapeutics provided an overview of their collaboration with Nationwide Children’s Hospital as Dr. Kevin Flanagan moves forward with the MPS IIIB gene therapy clinical trial.

Discussed the proposed 2014 budget and reviewed the 2013 financial inflows, comparing that to the 2013 budget and final outflows.

– Discussed the investment process and potential alternative investment strategies.

– Reviewed the Investment Policy Statement.

– Discussed adding a part time position for Technical Management and Development Director Assistant.

– Discussed request to provide fundraiser organizers the option to determine the researcher to whom their funds would be allocated.

– Discussed the emerging companies developing treatments for MPS diseases, and their timelines for clinical trials.

– Discussed changes to the program outline for Disney and adding additional guest rooms to our room block because of expected attendance increase.

– Discussed allocated MPS III research funds to Abeona. Recommendation to review with our Scientific Advisory Board and obtain detailed reports from Abeona.

– Discussed the officer election to be held at the next board meeting, for the four officers whose terms will end December 31, 2014.

– Discussed the 40th anniversary gala to be held in May in Chapel Hill, NC.

Approved allocating funds for our member families to receive two complimentary hotel nights at the Disney World conference.

Approved awarding the ML Partnership Grant to Dr. Flanagan-Steet.

Approved the new committee assignments.

Approved the changes to the investment program.

Approved changes to the research program.

Approved the 2014 research grants to be awarded.

Approved the 2014 budget.

The second board meeting was held May 3, 2014 in Chapel Hill, NC following the 40th Anniversary celebration at the Carolina Inn.

– Discussed the success of the gala and all the positive comments received.- The treasurer reported that “everything is on track – we’re steady as an organization.”

– Discussed the grant process with letters of intent received and being reviewed by a committee from our Scientific Advisory Board.

– Discussed status of MPS I newborn screening submission to HRSA and the current evidence-based review that is underway.

– The executive director and program director explored venues in Salt Lake City for the September 2015 family conference.

– Discussed pulling research funds from the Genistein project due to clinical trial start delays.

– Discussed the fundraising committee’s change to break into three subcommittees: technical/marketing, planned giving and walk/run.

– Discussed the plans to send the Disney conferences (family, CYCLE and SPIRIT) registration materials and the deadlines for submission of scholarship applications.

– Discussed the mobile app that is being developed for rollout at Disney.

– Discussed the 4th in the series of Society videos, the legislative video, that is in pre-production.

– Discussed the board evaluations and follow-up in areas of board input for staff evaluations, office security measures and the budget process.

– Discussed donor-directed research funds and how best to meet the needs of our members.


Approved the Investment Policy to move non-endowment funds to diversified, mid-range risk investments.

Approved a sub-committee to report to the Executive Committee to validate and negotiate terms with Abeona for our investment.

Approved a sub-committee to review donor-directed funds policy.

Approved pulling funds from the Genistein grant for an MPS III grant.

Unanimous vote received for the new officers: Stephanie Bozarth, President; Kim Whitecotton, Vice President; Lisa Todd, Treasurer; Amber Mongan, Secretary.

The Board held a supplemental board meeting via teleconference September 30, 2014. This was due to the extended time between the May meeting and the next scheduled meeting in conjunction with the family conference in December.

– Discussed increased inflows to date of 25% and donations from the Gala of almost $150,000.- Discussed the proliferation of new biotech companies with treatments for MPS diseases in their pipelines with some moving to clinical trial, and the relationships the Society has formed with them.

– Discussed plans for the BioMarin sponsored MPS and Adulthood meeting in October, and the survey conducted of adults in the US and UK.

– Discussed Development Director’s focus on writing grants and meeting with top donors.

– Discussed board nomination process which will begin end of September, to allow new directors to attend the last board meeting of the year.

– Discussed Disney: new Family Support display, mobile app for program book, greeters at registration, targeted breakouts and numbers registered to date.

– Discussed Legislative Committee’s Social Media Advocacy training webinar and plans for February DC Hill visits in conjunction with RDLA events.

– Discussed Governance Committee’s succession planning, including surveying stakeholders and plans to announce Executive Director’s 2015 retirement.

– Discussed plans for the US to host the International MPS Symposium in 2018 in San Diego, CA, with Dr. Dickson leading the scientific meeting.

– Discussed recommended locations for the 2016 family conference: Columbus, OH, Chicago and Pittsburgh.

Approved $112,500 to Abeona for MPS IIIB gene therapy clinical trial.

Approved grants awarded to date: general, MPS II, MPS VI, Ryan Foundation MPS I partnership and general funding to the LDN Neuroimaging Core at Univ MN.

Approved the Application for Fundraiser Directed Research document.

Approved hosting the 2018 International MPS Symposium in San Diego, CA.

Approved additions to Board committees.

The final board meeting of the year was held in conjunction with our annual Family Conference in Orlando, FL. The newly elected board members, Austin Bozarth, Holly and Aaron Thompson, whose terms began January 2015, joined this meeting to become acquainted with the workings of the board.

– Discussed the 34% financial increase compared to 2013.- Discussed details of the Disney conference and the surprise of eight Disney characters for a meet-and-greet after the banquet- Discussed decreasing emphasis of grant writing and greater focus on meeting with donors.

– Discussed having the office organize runs; first one will be LA run in 2015.

– Discussed the 2015 Strategic Communications Plan.

– Discussed current conservative investment strategy.

– Discussed the Governance Committee’s initial draft for the executive director job posting and beneficial information obtained from stakeholder survey.

– Discussed potential new Family Support Committee program, Journey Assistance Program, pending February 2015 budget approval.

– Discussed February Board meeting in DC with Hill visits and funding received to date.

Approved allowing the Society to allocate funds when the Society hosts the fundraising event.

Approved additions to Board committees.

Approved MPS III grant awarded.