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 2007 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. Seated: Debbie Dummann, Ernie DummannStanding: Stephen Frye, Kim Frye, Steve Holland, Kym Wigglesworth, Kris Klenke, Angela Guajardo, Alice Martin, Larry Kirch, Anne Gniazdowski, Tom GniazdowskiNot present: Steve Chesser, Adam Cohen, Luis Guajardo, Amy Holland, Sissi Langford, Klane and Amy White The first meeting of the year was held in Washington, DC March 4, 2007, prior to the Society's 22nd Annual Family Conference. Received a donation from Angels Hands Foundation for the 2007 Education Scholarship Program. Received $55,351 for the 2006 Annual Fund, a total of 409 donors with an average gift of $135. Anne and Tom Gniazdowski will be the 2007 Annual Fund co-chairs. A section of the website was developed exclusively for the walk/run coordinators for all the materials we provide that are also available on a CD. Initiated Quick Books online for financial accounting. A complimentary calendar will be developed and sent to each member every two years. A subcommittee was appointed to study the trend of families only renewing their membership the years of the Disney Conference in order to receive the complimentary Disney tickets. Approved allocating revenue from logo items for the Family Support program. Approved providing stipends to the International Symposium in Vancouver in 2008 in lieu of a Society sponsored Family Conference. Approved the 2007 budget. The second board meeting was held July 14, 2007 in Minneapolis, MN On MPS Awareness Day 2007 a total of 2006 e-cards were sent, 45% of which were viewed and the virility was 1.6%. Barbara and Ernie will be meeting with Amicus Therapeutics and continuing discussions about chaperone therapy for MPS diseases. IDEA bill passed; each state implements the federal regulations. The recommendations of the Society to the bill made it to the comments section, to ensure that children receive special services whether or not they have degenerative disease. New fact sheets were developed for grief and end of life issues. CYCLE conference will be held again fall 2008. Survey of the run/walk coordinators indicated consensus about not allocation a portion of the proceeds for the family support program. Discussed the family fundraiser reimbursement policy and the importance of keeping the fundraising costs low so we do not lose our Charity Navigator four star status. Approved stipend amounts for families attending the International MPS Symposium in Vancouver in 2008. Stipend will cover the hotel for three nights and conference registration for two adults and one youth (registration is waived for individuals with MPS). Larry Kirch facilitated the half-day Strategic Planning Exercise. Biggest challenges and highest priority identified as our Organizational Cultures – keeping the organization attentive to the needs of all our members and keeping the personal touch. Approved the gift acceptance policy. Approved draft office transition plan. Approved the following policies: financial signer, document destruction, and amended travel. Approved increasing the maximum allocation for social gatherings from $500 to $750 beginning January 2008. Approved funding the 2006 second year grants and the first year 2007 grants. The final board meeting in 2007 was held November 3, 2007 in Phoenix, AZ. Welcomed Tammy Brown, development director, and Sharon Cochenour, who was elected to the Board and whose term will begin January 1, 2008. During the 2007 Board nomination process, there was a tie for the sixth place. Both individuals will be filling positions on the Board. Adam Cohen announced that he will resign his Board position December 2007, mid-way through his term. Each Board member is strongly encouraged to establish a relationship with our legislative health aids. Official move of the office to NC will take place in November. Reviewed goals from strategic planning meeting held at last Board meeting and how the committees can best address the unique needs of our diverse membership. To date $313,000 has been raised from the 2007 5k walk/run! The walk/run booklets will be updated for 2008 and sent to all run coordinators and will be online. Approved filling the one year Board position Adam Cohen is vacating. Approved allocation for funds for Society hosted Newborn Screening meeting for professionals to be held in early 2008. Approved wording change in the Family Assistance Program application "up to a maximum of $3,000 per affected individual per 12 month period dependent on individual circumstance, available funds and committee's discretion. Approved hiring of new Development Director. Approved the personnel job descriptions. Approved leasing an office in NC. Approved holding the next Board meeting in Las Vegas to coincide with the MPS Network meeting dates.