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.
2015 was one of the committee’s busiest years. After determining position qualifications during 2014, it began an extensive recruiting process to hire a new executive director, beginning in 2015.
In response to a national search, the committee pored over hundreds of applications to find the best and most qualified individual to lead the Society.
Applicants were evaluated individually by the committee, and the top candidates partic- ipated in committee-led phone interviews. After interviewing two candidates in the office, the committee made its final recommendation to the board of directors in June.
Although the process was long and thorough, we were excited to announce the selection of Mark Dant to lead the Society into the future.
BOARD OF DIRECTORS ELECTION
In late summer, the commit- tee completed its 2015 annual board of director election.
The committee vetted all applications before the membership voting process, which included review of applications and interviews with those applicants.
BOARD OF DIRECTORS EVALUATION
In November, 2015, the Governance Committee completed the third annual board review and evaluation process. We identified gaps and helped improve board members’ performance. The review also helped the Society understand where training and coaching support were needed to help board members meet their goals and objectives and enhance accountability.
Most importantly, this process continues to create transparency and adds credibility to board decision making. This evaluation process has given each board member an opportunity to communicate objectively and to openly discuss strengths and weaknesses to ensure board members are in line with the Society’s identity, mission, values and goals.
To obtain this feedback, each board member completed an evaluation of the entire board, a self-assessment review of his or her own performance and separate anonymous evaluations for each of their peer board members.
After the results were gathered, each member held a one-on-one call with the governance chair and board president to discuss the results. This process continues to be very valuable.
Chairperson: Kris Klenke
2015 Family Support Committee Accomplishments:
- Supported 15 family conference scholarships that helped around 30 family members attend the annual family conference. The scholarships helped with travel arrangements and hotel
- Provided $30,000 in college education scholarship. Thirty$1,000 awards were given to individuals with MPS, siblings and their children.
- The Family Assistance Program helped seven families, for a total of $14,717. The program helps make financial ends meet when insurance doesn’t cover durable medical goods, like hearing aids and chair
- The Journey program awarded $456.53. Five families received assistance with mobile devices, computers and graduation
- The Medical Travel Assistance Program helps fund travel for those going more than 200 miles from home to see an MPS specialist. The program gave out $5,177 to 13
- The committee funded regional social events in Kentucky, Ohio and Pennsylvania
- The extraordinary experience program awarded $3,675 to four individuals. Experiences are for affected individuals 13 and older. This year, experiences included attendance at the Boy Scouts of America’s National Order of the Arrow, a camera purchase for a documentary and attendance at Nike football camps.
- Angels Among Us, a remembrance and memorial publication, went out to all
- White Rose: Remembrance and memorial efforts continued this year.
- Standing Ovations: People from each syndrome category were recognized in membership publications, offering highlights about each individual.
Chairperson: Jim Yard
2015 Fundraising Committee Accomplishments
Participants at the starting line during the Run the Night 5K event in Salt Lake City.
- Received a four star charity rating from Charity Navigator, representing sound fiscal management and commitment to accountability and transparency. This “exceptional” designation differentiates the Society from its peers and demonstrates to the public it is worthy of
- Supported an active membership roster of more than 700
- Raised approximately $478,500 through our walk/run and fundraising events.
- Hosted two inaugural National MPS Walk/Run
- Raised more than $168,500 through our 2015 Annual Fund campaign, accompanied by co-chairs Jim and Amy
- Supported 62 fundraising events that included: sports tournaments, Ironman triathlon, Ask Event (two hour benefit that educates donors and asks for donations), bake sales, bowl-a-thons, concerts, jeans day, bingo, auctions and many others
- Increased efforts to meet with major donors and Society
- Included mobile pledging successfully at our Annual Family Conference, raising $8,500.
- Hosted 39 Courage Pages on the Society’s website, individual family web pages to raise awareness and funds for the Society and raised $33,000.
- Received Combined Federal Campaign application
- Worked with donors to process more than 213 Employee Giving Campaign and Corporation Matching
- Increased membership in our Rising Sun Legacy Circle and processed new planned gifts from trusts and wills.
Chairperson: Stephanie Bozarth
2015 Committee on Federal Legislation Accomplishments
BOARD OF DIRECTORS ADVOCACY VISIT 2015
- Established priorities of 2015 Advocacy Visits: 21st Century Cures and OPEN
- Met with legislative representatives in February,
LEGISLATIVE ACTION ALERTS AND SIGN-ON LETTERS
- Step therapy patient advocacy letter coordinated effort (more than 100 rare disease groups signed on with us).
- Ensuring Access to Clinical Trials Act of 2015 (S 139 and HR 209.) Passed Senate by unanimous consent/working on House.
- The Advancing Hope Act: Kids V Cancer
- Kids Innovative Drug Act: Kids V Cancer
- Thank you to Chairman Upton (R-MI) and Representa- tive DeGette (D-CO) for leading the 21st Century Cures Initiative.
- Supported and provided personal story to NORD ODTC advocacy
- Unified Advocacy Organization letter re: 21st Century Cures Bill H.R
- Advancing Targeted Therapies for Rare Diseases Act S. 2030: signed on Oct 19,
FOOD AND DRUG ADMINISTRATION ADVOCACY
- FDA and National Institutes for Health Rare Disease Education Day
- Steve Smith serving as society representative for Alliance for a Stronger FDA advocacy group
- FDA outlined its new toxicology requirements for ultra-rare diseases, in its draft guidance for industry “Investigational Enzyme Replacement Therapy Products: Nonclinical Assessment.” Society submitted official remarks on regulations.gov.
- One on One with Jill Morris,NIH, at World Symposia about supporting MPS-related grant funding.
- Appropriations Language Submit- ted for NIH focused funding into MPS research.
RARE DISEASE CAUCUS
- Rare Disease Caucus briefing to the House of Representatives on Feb 26. Stephanie Bozarth presented perspective of rare disease (MPS) patient insurance coverage challenges and participated as panelist.
- MPS Society co-sponsored caucus in February and November
21st CENTURY CURES
- Society signed the Advocacy Organization Letter
- Launched Society Action Alert encouraging house members to support legislation
ADVOCACY AND NETWORKING MEETINGS/CONFERENCES/GALAS ATTENDED
- WORLD Symposia and COPA lunch
- EveryLife Foundation Community Congress
MEMBER EDUCATION AND ENGAGEMENT
- Rare Disease Day social media call to action
- FDA representative Laura Muldowney invited to Salt Lake City Family Conference 2015 to provide FDA perspective/education on drug development, clinical trials and importance of patient perspective.
- This Fight is Personal! Call to action legislative video roll-out.
- Member advocacy travel scholarships proposed for leftover funds.
- Advocacy Training Webinar: Making Noise about 21st Century
- NORD Gala
- NORD Breakthrough Summit
- Rare Voice Awards
Chairperson: Kimberly Whitecotton
2015 Education/Publicity Committee Accomplishments
- Created new fact sheets: Hospice Fact Sheet and ER
- MPS IV Resource Guide completed and mailed to MPS IV
- Completed video highlighting legislative .
- Promoted the ninth International MPS Awareness Day on May 15th
- Continued development on mo- bile-ready application for society members, donors and researchers on HTML platform
- Encouraged and thanked our researchers and Scientific Advisory Board on MPS Awareness Day
- Daily Living Booklets
- Increased social media efforts through Facebook and Twitter
- Published the Society’s quarterly magazine, Courage, Angels Among Us and supplemental materials
- Videotaped presenters at Salt Lake City Family Conference
- Continuously increasing/improving Society website capabilities.