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.
Chairperson: Kris Klenke
2012 Family Support Committee Accomplishments
- Supported the membership to attend the 27th Annual Family Conference in Boston, Massachusetts. The Society provided 16 stipends for families to attend and offset the cost of travel and hotel.
- Awarded 25 – $1,000 Continuing Education Scholarships to our members who are continuing their post high school education Scholarship were awarded to 11 individuals with MPS and related diseases and 14 siblings.
- Funded $23,969 in Family Assistance Program grants to help families obtain durable medical goods. Grants included: hearing aids, glasses, stair glide, Rifton Tryke, Ergo chairs, vehicle modifications and dental work.
- The Medical Travel Assistance Program (MTAP) provided funding for 15 families. Awarded $6,605 for mileage and airfare reimbursement to families traveling more than 200 miles from home for medical appointments.
- Promoted and provided $2,250 in financial support for three “family-organized” regional social gatherings located in Utah, Illinois and Ohio.
- Provided support to 15 families for emergency relief efforts. A total of $9,908 was awarded.
- Published the 10th annual Angels Among Us, Remembering Our Special Children memorial publication.
- Continued the White Rose Program and grief booklet series for families who child passed away during the year.
- 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 the challenges of having MPS.
- Issued Outstanding Siblings, Children and Relatives (OSCAR) Awards, recognizing outstanding family members for support, dedication, compassion and love provided as they battle MPS with their family member.
- Promoted all Family Support Programs through Web site, Courage, and direct communications with members.
Chairperson: MaryEllen Pendleton
- Received a three star charity rating from Charity Navigator, representing a good performance that exceeds or meets industry standards and performs as well as or better than most charities in its Cause.
- Supported an active membership roster of over 700 members
- Raised approximately $380,000 through our Walk/Run and Fundraising events
- Supported 17 Walk/Run events and 57 Fundraising events that included: Ask events
(two hour benefit that educates Donors and asks for donations), bake sales, bowl-a-thons, concerts, golf tournaments, recitals, trunk shows and many others.
- Raised more than $118,000 in our 2012 Annual Fund campaign
- Introduced Mobile Pledging, raising almost $10,000 with this new technology platform.
- Launched Courage Pages on the Society’s website, informative individual family web pages to raise awareness and funds for the Society.
- Updated our website with new Planned Giving information, Courage Pages and current event guides.
- Received Combined Federal Campaign application approval for consecutive year.
- Continued working with our Donors to receive funds through the Combined Federal Campaign and United Way.
Chairperson: Stephanie Bozarth
- Continued partnering with Rare Disease Legislative Advocates, a clearing house for patient advocacy groups to promote common legislative issues
- Provided an educational webinar to our members and made available online through our legislative toolkit, “In district Legislative Advocacy”
- Submitted language to the Senate Appropriations Subcommittee on Labor Health and Human Services included in the Significant Item Report for 2012
- Advocated for the U.S. Senate for the continued passage of the resolution to recognize May 15, 2012, as National MPS Awareness Day presented by Senator Lindsey Graham
- Attended the Rare Disease Caucus Briefing and Rare Voices Gala
- Legislative committee participated in the annual Capitol Hill visit to meet with
21 senator’s offices representing 18 states.
- Supported the following legislative efforts: legislation for the Creating Hope Act for Rare Pediatric Diseases; Transforming the Regulatory Environment to Accelerate Access to Treatments Act; Fast Access to Specialized Treatments. Each was a component of the Safety and Innovation Act signed into law in 2012.
- Participated in Rare Disease Day activities in Washington D.C.
- Submitted formal comments to the Agency for Healthcare Research and Quality (AHRQ) Technical Brief on ERT for Lysosomal Storage Diseases
- Increased timely email alerts to our members for click and send action alerts to senators and congressmen.
Chairperson: Kimberly Whitecotton
2012 Education/Publicity Committee Accomplishments
· Promoted the sixth International MPS Awareness Day on May 15, 2012
· Launched 2nd annual Facebook contest for MPS Awareness Day
· Introduced a Social Media Policy
· Published fact sheets on “Wishes” for our children
· Launched the National MPS Society, “Journey of Hope”, the first in a new video series
· Completed additional website enhancements and online toolkits for our membership
· Created teleconferencing opportunities at the Boston Family Conference
· Developed online video sessions from the family conference speakers to be accessed by our membership
· Published the Society’s quarterly magazine, Courage, and supplement newsletters
· Introduced the Volunteer Spotlight article for Courage