Committees

If you are interested in participating on a committee or have expertise in a specific area, please consider joining a committee. We encourage all members of the Society to become active. You can contact the committee chairs directly by e-mail by clicking on the e-mail link below their name.

Family Support

Chairperson: Kris Klenke
E-mail: kris@mpssociety.org

2011 Family Support Committee Accomplishments

    • Supported the membership to attend the 26th Annual Family Conference in St. Louis, Missouri.  The Society provided 17 stipends to families to attend and offset the cost for travel and hotel fees.
    • Awarded twenty-five $1,000 Continuing Education Scholarships to our members who are continuing their post high school education.  Scholarships were awarded to eight individuals with MPS or related diseases, fifteen siblings, one parent and one child of an individual with MPS or related disease.
    • Promoted and supported two family organized regional social events totaling $1,271.
    • Awarded twenty $1,000 scholarships through the 6th annual Continuing Education Scholarship Program to six affected individuals,eleven siblings,two parents and one child of an affected adult.
    • Funded $23,060 in Family Assistance Program Grants to help aid families with durable medical goods.  Items funded include: scooters, hearing aids, adaptive trikes and an enclosed bed.
    • Awarded $5,809 through the Medical Travel Assistance Program in its inaugural year.  Thirteen families were awarded aid in mileage and airfare reimbursement for families traveling more than 200 miles from home for medical appointments.
    • Continued the White Rose program and grief booklet series for families whose child passed away during the year.
    • Published the ninth annual Angels Among Us/Remembering Our Children memorial tribute.
    • Awarded Standing Ovation Awards to individuals with MPS and related diseases.  One individual from each MPS subtype is honored each quarter.  We are proud to honor their courage, resilience, tenacity and passion for life as they face daily challenges.
    • Awarded Outstanding Siblings, Children and Relatives (OSCAR) Awards recognizing outstanding family members for the support, dedication, compassion and love they provide as they battle MPS with their family member.
    • Promoted all family support programs through the website, Courage articles and mailings.

 

Fundraising

Chairperson: MaryEllen Pendleton
E-mail: maryellen.pendleton@mpssociety.org

2011 Fundraising Committee Accomplishments

    • Received a Four-Star charity rating from Charity Navigator, representing excellent performance that exceeds industry standards and performs better than most charities.
    • Supported an active membership roster of more than 700 members.
    • Raised approximately $520,000 in funds for research and family support programs.
    • Supported 13 Walk/Run events and 52 Family Fundraising events across the country.
    • Raised over $95,000 from the ninth Annual Fund campaign,benefiting family support programs, legislative initiatives and general operating needs. The 2011 Annual Fund was the most successful in eight years!
    • Continued the Sponsor A Child for A Cure, (SACFAC) program with five Walk/Runs in 2011! The SACFAC raised awareness and provided an opportunity for families to help the Society. SACFAC raised over $25,000. This program provides an opportunity for families to raise money for a Walk/Run regardless of location within the United States.
    • Updated Event Guides to enable our membership success in their awareness and fundraising endeavours.
    • Continued working with the Combined Federal Campaign and United Way to raise funds.
    • Launched new website with online fundraising tools.
    • Implemented a new Planned Giving Program with the Society.

Legislative

Chairperson: Ernie Dummann
E-Mail: ernie@mpssociety.org

2011 Committee on Federal Legislation Accomplishments

    • Updated the National MPS Public Policy Document presented to Congressional members when advocating in DC
    • Continue partnering with the Rare Disease Legislative Advocates which is a clearing house for patient advocacy groups to advocate for common legislative issues, comprised of more than 200 rare disease patient organizations.
    • Submitted language to the Senate Appropriations Subcommittee on Labor Health and Human Services included in the Significant Item Report for 2011
    • Continued the Policy with Partners Program (PwP)
    • Worked with the U.S. Senate to again pass the resolution which recognized May 15, 2011 as National MPS Awareness Day
    • Received special acknowledgement from the House of Representatives referencing National MPS Awareness Day
    • Introduced the MPS and related disease to the Rare Disease Caucus during DC visit
    • Committee members received training via webinar on “How Advocacy Moves Government”
    • Continue to advocate for additional updates to the Compassionate Allowances Program by the Social Security Administration to include all MPS and related disease
    • The committee continues to work closely with the NIH to increase research funding and bring awareness of MPS diseases. In FY 2010 we saw over a million dollar increase in MPS funding from previous years which is to continue at this 8 million dollar level through FY2012.
    • Interviewed several consulting firms to aid the society with our legislative advocacy efforts
    • The following are some of the legislation supported in 2011:
    1. Advocated for funding for the New Division of Biochemical and Genetic Diseases within the Office of New Drugs, under the FDA for a more specialized drug review
    2. Advocated for full funding of the Lifespan Respite Care Act
    3. Advocated for Creating Hope Act for Rare Pediatric Diseases
    4. Advocated for the Medical Foods Equity Act
    5. Unlocking Lifesaving Treatments for Rare Diseases Act
    6. Reauthorization of the Prescription Drug User Fee Act (PDUFA)

Education/Publicity

Chairperson: Kim Frye
E-Mail: frye@mpssociety.org

2011 Education/Publicity Committee Accomplishments

    • Promoted the 5th International MPS Awareness Day on May 15th.
    • Completed Website Transfer and Launch
    • Published fact sheets on Special Education, Hydrocephalus, G Tube Feeding and ML Feeding.
    • Launched our Inaugural Facebook Contest for MPS Awareness Day.
    • Completed outreach thank you campaign to international researchers.
    • Published the Society’s quarterly magazine, Courage and newsletters.