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 2012 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 email@example.com.
The first board meeting of 2012 was held February 4th in Dallas, TX where we welcomed new board members Dawn Checrallah, Lisa Todd and Roy Zeighami.
|Discussed the proposed 2012 budget and reviewed the 2011 financial inflows, comparing that to the 2011 budget and final outflows.
Discussed the investment process and potential alternative investment strategies.
Discussed the Society’s financial checks and balances system.
Discussed the new biotech company, Ultragenyx, Shire’s plan for an MPS IIIB natural history study and the Society’s nomination for MPS I newborn screening to the HRSA committee.
Discussed fundraising goals to focus on major donors, corporate giving, planned giving and grants being submitted plus focus on walk/runs.
Discussed MPS Awareness Day art contest with winning art on the cover of the 2013 New Year’s card.
Discussed adding Mobile Causes allowing donors to text donations.
Discussed work with M+R: online webinars and increased action alerts plus support of ULTRA bill, allowing FDA to use surrogate markers as primary endpoints.
Discussed new family support Emergency Relief program funded by an anonymous donation.
Discussed policy for Family Assistance Program iPad funding: one per affected individual with $150 co-pay.
Approved the new Sexual Harrassment Policy.
Approved adding Dr. Calogera Simonaro to the Scientific Advisory Board.
Approved the 2012 committee assignments.
Approved the 2012 budget and research grant categories.
The second board meeting was held July 26, 2012 in Boston, MA, prior to our annual Family Conference.
Discussed the Society’s HRSA newborn screening application for MPS I was approved and will go for evidence-based review.
Completed fundraising video was shown to the Board and positively received.
Discussed new fundraising program, Donor Pages, that will be offered in September, allowing members website page with their personal information.
Mobile Cause Texting was rolled out for MPS Awareness Day and will be highlighted at the conference banquet.
Discussed the increased member involvement in legislative advocacy thanks to our work with M+R and the added action alert blast emails.
Discussed the legislative projects completed: MPS Awareness Day Resolution, approval of FDA Safety and Innovation Act with support for surrogate endpoints, MPS language included in 2013 Appropriations language, advocacy webinar presented April 24th, and six committee members met with 21 Senators’ offices in March.
Discussed family support updates: 11 applications approved for Medical Travel Assistance Program, six applications approved for Extraordinary Experience Program, six requests received for Family Assistance Program, and nine requests made to the Emergency Relief Program. Twenty five education scholarships funded plus 13 family conference scholarships and three CYCLE conference scholarships.
Annual fund 2012 chairs are Kim Whitecotton and her mother, Lennie Forkas. The 2011 Annual Report is completed.
Discussed the increased efficiency of the audit process which positively affected the May 15th completion of tax returns.
Approved Salt Lake City as the location for the 2015 family conference.
Approved additions and changes to board committees.
Approved officer elections for terms 1/1/2013 -12/31/2014: Steve Holland president, Stephanie Bozarth vice president, Tom Gniazdowski treasurer, and Kim Whitecotton secretary.
Approved funding for first year of 2012 grants and second year of 2011 grants.
The final board meeting of the year was held in Dallas, TX on October 20, 2012. The newly elected board member, Carrie Dunn, whose term began January 2013, joined this meeting to become acquainted with the workings of the board.
- Discussed decrease in donations received compared to previous years’ and decrease in fundraising dollars because three major fundraisers are not being held in 2012.
Discussed adding online application programs for family support program applications (education scholarships, Family Assistance Program applications, etc.)
Discussed expiration date of February 2013 for the office lease and plans for a new lease with updates made to existing office space.
Discussed preliminary plans to celebrate the Society’s 40th anniversary in 2014, including a gala.
Discussed hosting the February 2013 board meeting in DC so the board can meet with their Senators and Representatives for legislative advocacy.
Discussed use of electronic voting for the board nomination and the lower voting response.
Discussed board engagement and board annual fund participation.
Discussed recommendation to education both our conference attendees and board about parliamentary procedure for better understanding.
Approved providing funding for social gatherings held in conjunction with other events.
Approved adding an ad hoc investment committee.
Approved the new social media policy.
Approved changes to the childcare policy.
Approved limiting education scholarships to affected individuals and their siblings. Approved discontinuing the Emergency Relief Program.
Approved additions to Society’s committees.
Approved nomination of Lisa Todd as chair of Governance Committee.