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
2013 Family Support Committee Accomplishments
• Supported 13 families to attend the 28th Annual Family Conference in San Antonio, Texas. These conference scholarships offset the cost of registration, travel and hotel.
• Awarded 28 $1000 Continuing Education Scholarships to members who are continuing their post-high school education. Scholarships were awarded to 8 individuals with MPS and related diseases, 1 child of an affected individual and to 19 siblings.
• Funded $14,650 in Family Assistance Program grants to help families obtain durable medical goods. Grants included scooters, car lift, home ramp, WIKE bicycle stroller, sleep safe bed, adaptive car seat and adaptive stroller.
• Provided funding for 20 family applications through the Medical Travel Assistance Program. In 2013, the program awarded $8,943 for mileage, airfare and hotel reimbursement to families traveling more than 200 miles (one way) from home for medical appointments.
• Promoted and provided $2,250 in financial support for three family organized regional social gatherings in Illinois, Ohio and Utah.
• Funded five Extraordinary Experience applications for children and young adults with MPS. In 2013, the Society awarded $4,400 for trips to Boston, Japan, London, Paris and for driving lessons. There is no age limit for this program and “Life Enriching Extraordinary Experiences” are considered.
• Published the 11th 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.
• Recognized individuals with MPS and related diseases with Standing Ovation awards. Two individuals from each MPS subtype is honored each quarter, acknowledging their courage, resilience, tenacity and passion for life as they face the challenges of living with MPS.
• Introduced opportunity for the Family Assistance Programs to include applications for iPad funding.
• Implemented on-line application platform for Family Support Programs
• Sent the Award of Courage signed by President Steve Holland to all of our affected individuals with MPS and related diseases.
Chairperson: MaryEllen Pendleton
2013 Fundraising Committee Accomplishments
• 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 $388,000 through our Walk/Run and Fundraising events
• Supported 16 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, tea party, jeans day, bingo, auctions and many more.
• Raised more than $135,000 in our 2013 Annual Fund campaign.
• Included mobile pledging successfully at our Annual Family Conference.
• Hosted 22 Courage Pages on the Society’s website, informative individual family web pages to raise awareness and funds for the Society and raised $35,000.
• Updated our website for members with a comprehensive fundraising toolkit.
• Received Combined Federal Campaign application approval
• Created a two-minute video and launched a fundraising effort through
Chairperson: Stephanie Bozarth
2013 Committee on Federal Legislation Accomplishments
• Continued partnering with Rare Disease Legislative Advocates, a clearing house for patient advocacy groups to promote common legislative issues.
• Submitted language to the Senate Appropriations Subcommittee on Labor, Health and Human Services included in the Significant Item Report for 2014
• Advocated for the U.S. Senate for the continued passage of the resolution to recognize May 15, 2013 as National MPS Awareness Day as co-signed by Senators Graham(R-SC), Hoeven (R-ND), Begich (D-AK), Whitehouse (D-RI), Heitcamp (ND), Murkowski (R-AK), and Boxer (D-CA).
• Awarded Senator Lindsey Graham (R-SC) for his advocacy achievements on behalf of National MPS Awareness Day and NIH funding for grants directed at MPS research.
• Attended the Rare Disease Caucus briefing.
• Participated in the annual Capitol Hill visit to meet with 22 senators’ and 10 house of representatives’ over two days.
• Participated in Rare Disease Day activities in Washington D.C.
• Participated successfully in accelerated approval advocacy to include rare disease language in the FDA Draft Guidance. The Society launched several initiatives to help reach the goal of over 100 congressional signatures on a letter to the FDA.
• Supported the following legislative initiatives: Kids First Research Act of 2013; Life Span Respite Appropriations; Compassionate Allowance within the Social Security Administration; Orphan Drug Tax Credit; Undiagnosed Diseases Research and Collaboration Network; Newborn Screening Save Lives Reauthorization Act and the Coalition Letter on Healthcare Information Technology framework.
• Supported formal comments to the Agency for Healthcare Research and Quality technical brief on enzyme replacement therapy for lysosomal storage diseases.
• Updated the website to include interactive advocacy for members and contacted all super advocates to thank them personally for advocacy efforts and invite to join the legislative committee.
• Created advocacy video for the annual family conference to promote education and engagement with live action alerts.
Chairperson: Kimberly Whitecotton
2013 Education/Publicity Committee Accomplishments
• Promoted the 7th International MPS Awareness Day on May 15.
– Launched 3rd annual Facebook contest for MPS Awareness Day
– MPS Day outreach to Researchers and Scientific Advisory Board
– Provided “What is MPS” cards to membership via Join the Search
• Completed MPS video revisions for Newly Diagnosed, Fundraising and Daily Living with MPS.
• Videotaped San Antonio Family Conference speakers and provided link on MPS Society website
• Updated Daily Living Booklet; Updated fact sheets: Physical Therapy, Transplant, Air Travel Information and Orthopedic Disorders in Children with MPS and Related Diseases.
• Created the fact sheet “Your Donation: Your Decision”.
• Published the Society’s quarterly magazine, Courage, and supplement newsletters.
• Increased and Improved website capabilities