The Governance Committee is responsible for overseeing the efficiency and performance of the board of directors and the process of recruiting for new directors. The election process, including the review of all applicants and individual interviews, is handled by this committee before membership votes. The committee reviews and evaluates board members to ensure the National MPS Society’s identity, mission, values and goals.
Contact: Amber Mongan
The Family Support Committee is responsible for overseeing all of the society’s family support programs available to our members, such as financial assistance with medical durable goods, medical-related travel, extraordinary experiences, continuing education scholarships, conference scholarships and more. The committee helps to organize the annual family conferences and recognizes our families who have lost a loved one through the CYCLE and White Rose programs.
Contact: Larry Kirch
The Fundraising Committee supports various fundraisers hosted by our members and oversees larger events, such as 5K walk/runs or galas. They work with membership to raise funds through the Annual Fund campaign, mobile pledges, matching gifts, recurring gifts and planned gifts. They are accountable for maintaining sound fiscal management for the prestigious Charity Navigator rating.
Contact: Chris Tippett & Stephanie Bozarth
[email protected] or [email protected]
The Advocacy Committee establishes the priorities of the Rare Disease Week advocacy efforts in Washington, D.C. and keeps members informed about legislative action alerts and sign-on letters. Members of this committee also participate in advocacy efforts with the Food and Drug Administration (FDA), National Institutes of Health, National Organization for Rare Disorders (NORD) and any caucus that pertains to rare diseases. This committee is responsible for keeping all members informed of any new bills or legislation that would affect the rare disease population and provides training for advocacy speaking opportunities.
The Education/Publicity Committee oversees all of our written and electronic publications for our members, such as Courage e-newsletter, fact sheets and resource guides. They organize MPS Awareness Day efforts, increase our social media reach and work to continuously improve our website.
Ad Hoc Committees:
Adult Resource Committee
Sibling Resource Committee
Contact: Samantha Slawson
The Adult Resource Committee provides input to the Board of Directors about the needs of adults affected by MPS or ML. This committee meets regularly to discuss new ideas and talk about programs and materials that adults with MPS or ML can benefit from.
Contact: Kris Klenke
The Remembrance Committee provides input to the Family Support Committee and the Board of Directors about the needs of bereaved families within the National MPS Society membership. This group will offer suggestions to improve programs, website and materials for this population. The committee plans and organizes remembrance events held at the annual family conference.
Contact: Helen Kirch, Chelsey Klenke or Nathan Grant
The Sibling Resource Committee provides input to the Family Support Committee and the Board of Directors about the needs of the sibling population. This committee will offer suggestions to improve programs, website, sibling sessions at the annual conference and materials for this population.