2017 ANNUAL REPORT CHAIRMAN OF THE BOARD STEPHANIE BOZARTH

I continue to be in awe of the progress we are making to cure MPS and ML…

MISSION

The National MPS Society exists to cure, support and advocate for MPS and ML.

PRESIDENT AND CEO TERRI KLEIN

Our members are a constant source of inspiration for Team MPS and ML on a P.O. Box 14686 daily basis… Durham, NC 27709-4686 877.MPS.1001 919.806.0101 MPSSOCIETY.ORG Follow us!

PICTURED ON THE COVER: Hudson (MPS II) and Poppy (MPS VII) Roman IN RECENT YEARS there has been a staggering increase of nonprofit communities addressing public needs not overseen by government entities. The larger philanthropic community, around the world, continues to improve efforts in health and education systems. The work, at times, can seem magnanimous. But new methods and models for complex issues are crucial for addressing evolving science, identifying the unmet needs of patient communities and providing organization sustainability.

2017 was a critical year full of change for the National and researchers need patient participation to ensure MPS Society. These significant changes included the the support of their science. Connecting the dots with creation of community data systems; new programs experts, researchers and clinicians, and championing resulting in interconnectedness among all members; multinational clinical trials will strengthen research and and refined communications in research, education improve outcomes, ultimately shrinking timelines to and family support programs. Changing systems approved therapies and cures. is never easy, but in order to change outcomes for A long-term vision of the Society has been to provide patients with MPS and ML, we needed to revive our direct services to families at the time of diagnosis. The focus and embrace change by working collectively and Pathways Program launched in May (see page 7), collaboratively. Critical objectives, including improving allowing our team to begin meeting with families access to treatment, advocating for newborn screening, nationwide. This program transforms our ability to educating our community on frontier science, increasing fulfill the unmet needs of those beginning this journey. family support programs and providing information for patient care, are paramount. The 2017 Annual Report highlights key areas the National MPS Society is working in with research, family Twenty-five years ago, the U.S. Orphan Drug Act support and legislative advocacy. It also illustrates stimulated rare disease research. It, combined with how we can achieve what might seem impossible the FDA’s Rare Pediatric Disease Priority Review with tireless volunteers, the essential foundation of a Voucher Program, made rare disease research successful nonprofit organization. With the efforts of our continuously attractive to scientists, as illustrated by the volunteers and internal team combined with gifts from November FDA approval of Mepsevii™ by Ultragenyx donors around the world, we move forward reenergized, Pharmaceutical for MPS VII. Another long-awaited MPS centering on new programs, new research and new disease celebrates an approved therapy. clinical trials—moving steadfastly forward for diseases Evolving science in gene editing, gene therapy, still in search of a cure. enzyme replacement therapies and optional delivery “With research, possibilities are limitless” mechanisms has led the Society to collaborate with more than 30 global industry partners. Members of our board of directors and team traveled to the WORLD SYDNEE JENSEN (MPS I) AND ALLISON RESTEMAYER (MPS I) Symposium™ (We Organize Research Lysosomal Diseases) in San Diego in February. With record attendance, MPS and ML science encompassed a significant portion of the program content. We are thrilled to see this level of research focus.

As detailed in the following pages, the Society funded a record $750,000 in MPS and ML research during 2017. We continue to recognize the uniqueness and diversity of rare diseases, and we foster an international grants funding program. We need researchers who are dedicated to the discovery of treatments and cures, GOVERNANCE COMMITTEE

THE GOVERNANCE COMMITTEE continues to play a very important role in the National MPS Society’s effective guidance of our organization. Through oversight from the board of directors, this committee helps ensure we continue to properly serve our membership and fulfill our mission.

THE SPIVEY FAMILY: TYLER, KAITLYN (MPS VI), SHERI WISE (MPS IVA) AND FANNY ZAMBRANO (MPS IVB) NOAH AND ABEL

In 2017, the Governance Committee considered the individually. Upon approval of the Executive Committee overall staffing and personnel needs of the Society, of the board, the Society was excited to announce Terri including compensation recommendations. One need Klein, National MPS Society director of development was to fill a position for the newly created Pathways and operations, as the new president and CEO. Program. Others included replacing personnel for both In addition, the committee oversaw the 2017 annual the family support coordinator, and president and board of directors election process for the upcoming CEO positions. All of these important positions were 2018–2019 term. This consisted of a vigorous vetting successfully filled with qualified personnel. process of all applicants, including personal interviews, Regarding the president and CEO position, the prior to the membership voting. For the 2018–2019 committee began an extensive recruiting process in term, two new members were welcomed to the board the fall of 2017. After determining critical external and of directors, along with the incumbents. We look to internal needs of the Society, the committee initiated these outstanding volunteers to help guide the Society a national search to find the most qualified individual in the months and years to come. to lead the Society in the next decade. Through 2 this process, candidates were evaluated and vetted FAMILY SUPPORT COMMITTEE

FAMILIES ARE THE LINCHPIN OF THE MPS AND ML COMMUNITY, and the National MPS Society continues to work to assist families in every way possible. Whether it’s financial assistance during a hard time, a special treat for an affected family member or to help make education dreams come true, we support families across the nation. In 2017, two additional committees were formed (Remembrance and Sibling Resources) to address the unmet needs of our membership.

Our family support initiatives include financial grants for our familyassistance program (providing medical durable goods denied by insurance), medical travel assistance program, scholarships to attend the annual family conference, continuing education scholarships, extraordinary experiences for individuals with MPS or ML, regional social gatherings, and MPS journey assistance for specific needs of an MPS patient.

In 2017, we invested more than $120,000 in the following family support initiatives: Family Assistance Program Continuing Education Scholarship (CED) • Approved 13 applications totaling $17,559. • Awarded 30 $1,000 full-time scholarships and • Allocated funds for dentures, evacuation chairs, one $500 part-time scholarship. glasses, hearing aids, therapeutic tricycle, • Introduced the Jeff Bardsley Scholarship and awarded wheelchairs, wheelchair ramps and wheelchair one $5,000 scholarship to an individual with MPS. modifications. • Implemented a lifetime cap on the CED program of $5,000, (not including the Jeff Bardsley Medical Travel Assistance Program Scholarship award). • Approved 16 applications totaling $7,070. • Approved increased travel eligibility to $700 Extraordinary Experience Program per applicant. • Awarded three extraordinary experience applications, including a summer camp. Conference Scholarships • Awarded $42,000 in scholarships to the Annual Family Social Gatherings Conference in Minneapolis, MN. • Funded three events, held in Kentucky, Ohio • Approved increased scholarship eligibility up to and New York. $1,100 per applicant. Journey Assistance Program • Approved 10 applications for assistance. • Authorized recipients to receive up to $500 per individual with MPS or ML, annually. • Awarded funds for bereavement expenses, iPads and a recliner.

My life has been greatly impacted because of having MPS II. I have gained an appreciation for 3 modern medicine and for the impact it has on everyday life. As a recipient of the National MPS Society’s Jeff Bardsley Continuing Education Scholarship, I am able to pursue my goal of higher education at the university level. I want to continue my education in the engineering sciences field and make a difference for those in need. My career goal is to work in a lab or for a company in the medical field producing new medicine and engineering new technology to shape a better world.

NICHOLAS DI TOMMASO, MPS II LEGISLATIVE COMMITTEE

ADVOCACY IS THE BEST WAY for the MPS and ML community to share rare disease stories with lawmakers and policy influencers who can help make a difference on a federal level.

Federal policies can increase life-saving medical research and access to care for MPS patients. The Legislative Committee focuses on a number of goals throughout the year, including regular calls to action on rare disease legislation, disseminating carefully crafted appropriations language to spread our message to new members, collaborating with the rare disease community as a whole, conducting advocacy training webinars, and growing and fostering relationships with key decision makers.

In 2017, the Legislative Committee: • Facilitated 31 MPS and ML advocates meeting with • Drafted sign-on letters for ending the FDA/NIH hiring 43 legislators over two days to advocate for the OPEN freeze, FDA User Fee Agreements Coalition, RACE Act, Affordable Care Act and increased NIH funding for Children Act, request for Lifespan Respite and the for MPS diseases. National Family Caregiver Support Program, NORD letter on enhancing patient engagement efforts across • Presented Jeff Denham (R-CA), with the MPS FDA, NORD letter to protect the Orphan Drug Tax Advocacy Award. Credit, and proposed adaptation of the ICER value • Provided onsite training in Washington, DC, for our framework for the assessment of treatments for Speaker’s Bureau Program. ultrarare conditions. • Created action alert for Missouri Newborn Screening • Attended advocacy and networking conferences, Act for inclusion of MPS I and spinal muscular atrophy, including World Lysosomal Disease Conference, World and a membership alert on community advocacy. Orphan Drug Conference, Global Genes and the Rare • Partnered with the National Organization for Rare Voice Awards. Disorders (NORD) for education of healthcare reform. • Continued member education and engagement efforts • Increased newborn screening awareness opportunities with webinars and conference calls on social media with collaborations led by EveryLife Foundation and strategies, expanded access vs. right to try legislation, patient advocacy within individual states. and grassroots targeted advocacy.

REP. JEFF DENHAM (R-CA) RECEIVES THE MPS ADVOCACY AWARD, PRESENTED BY THE MPS BOARD, ADVOCATES AND TEAM IN WASHINGTON, DC

4 EDUCATION & PUBLICITY COMMITTEE

THE NATIONAL MPS SOCIETY CONNECTS AND ENGAGES with the MPS and ML community through education and publicity efforts. Whether via social media campaigns, MPS Awareness Day activities, education fact sheets or promotional materials, we are always looking for new ways to reach our target audiences.

With our communications director, the team has expanded our reach even further through enhanced social media, email marketing, and digital and print publications. Our social media channels, with focus on increased member and donor engagement, have been well received. The National MPS Society’s website, www.mpssociety.org, was redesigned in 2017 with a fresh, new appearance. Our website provides clear pathways for members, researchers, physicians and the public to access a multitude of resources.

Raising awareness for MPS and educating communities nationwide is very important. When Thomas Jefferson Middle School, asked me to come share MPS Day to honor one of our families, there was only one answer—yes. These young philanthropists raised funds and awareness throughout New Jersey and spent the afternoon learning about MPS. I’m so proud of our upcoming generation. They have embraced a difficult disease that has impacted one of our families three times over. Their efforts created real change.

TERRI KLEIN TAYABBA BEG (MPS III PARENT) AND TERRI KLEIN EDUCATING THOMAS JEFFERSON MIDDLE SCHOOL STUDENTS ON MPS

In 2017, the Education and Publicity Committee:

• Created International MPS Awareness Day materials • Launched the redesign of www.mpssociety.org to to share with members and donors around the provide ease of access to resources for members, country. Items included: MPS Day trifold mailer, physicians and researchers. Forget Me Not flower seed packets, two-week action • Developed the MPS VII Resource Guide, in awareness calendar and directions for Take to the collaboration with patients, professionals and Skies campaign website, hosted by Shire. physicians. • Continued the National MPS Society thank you card • Continued updating essential fact sheets and campaign mailing to researchers around the country. syndrome booklets. • Increased social media outreach efforts with Facebook • Revised tactical plans to align with the National (7,000 followers) and Twitter (2,000 followers), in MPS Society’s new strategic plan. 12 months.

• Increased e-Courage bi-monthly newsletter 5 subscriptions. e-Courage now reaches more than 1,200 members and is also available on our website. ADULT RESOURCE COMMITTEE

THE ADULT RESOURCE COMMITTEE (ARC) is comprised of adults with MPS or ML. Because of successful therapies and trials, some patients with these disorders are living longer, higher quality lives. ARC has been created to address and fulfill the unique needs of adult patients living with MPS or ML.

The goals of ARC are to increase resources and involvement of adult patients within and outside of the National MPS Society. Their platform provides increased engagement opportunities with membership, legislators, scientists and the general public. In addition, ARC creates key networking opportunities that are essential to these deserving individuals.

ADULTS WITH MPS OR ML

In 2017, ARC: • Developed the “Road Kit” to provide information and • Formed a committee focused on advocating for adults resources for those who are transitioning into or have with MPS or ML syndromes. entered adulthood. • Increased both membership and public awareness of • Participated in the planning for adult breakout these syndromes through stories of encouragement, sessions and discussions at National MPS Society hope and successes obtained by adults with MPS conferences and gatherings by the adult community. or ML.

6 PATHWAYS COMMITTEE

THE NATIONAL MPS SOCIETY’S LONG-TERM VISION has been to provide direct services to families in need. It has been our hope to be forward thinking and provide skilled services, something beyond a phone call, that would transcend the MPS journey for newly diagnosed families. In 2017, this program, Pathways, became a reality with support from BioMarin and the board of directors.

Pathways is designed to provide education and support to families and individuals with MPS and ML. Upon diagnosis, Pathways directly connects members with services in their community and integrates members into the Society for support. The program includes in-home visits with families, something never achieved before, and provides a comprehensive, compassionate and more meaningful line of support. This program provides continued navigation and resources to ensure a family can obtain the best quality of care for their loved one.

In 2017, Pathways: • Established a committee and hired its first family • Provided services to 50 families and visited 16 families support lead, with social work skills and education. in person. Each syndrome was represented in services provided nationwide. • Created a training and educational environment for the Pathways team to triage the variability of MPS • Hired a second part-time Pathways position in the and ML syndromes. fourth quarter and began to build program assets required for consistent programming. • Implemented new processes to ensure newly diagnosed families receive immediate services. • Launched a new contact management system to foster the Pathways Program and help to integrate members into all programs at the Society.

CHRISTENSEN FAMILY AUSTIN (MPS IIIA) AND CHERYL NOLL AND COREEN GRAY

7 RESEARCH GRANTS

RESEARCH REMAINS PARAMOUNT to the National MPS Society’s mission—to find cures for MPS and ML. Grant funding, research partners and collaboration ensure significant progress toward a better future for all affected individuals.

In 2017, the National MPS Society subsidized or invested historical levels of funding—the largest annual amount invested in our research program history. More than $750,000 was invested in total grant funding for 2017, which includes second-year funding for grants awarded in 2016, and $110,000 in partnership with The Ryan Foundation and University of Pennsylvania through the Million Dollar Bike Ride. Funding research is critical to find cures. The funding process begins with our receiving many letters of intent from researchers from around the world outlining their research proposals. After reviewing those letters, our Scientific Advisory Board review committee requests full grant proposals for evaluation and recommended funding.

The Society also committed $30,000, in partnership with the International Society for Mannosidosis and Related Diseases, to Dr. Steven Gray for ML research; $50,000 to the University of North Carolina, Dr. Mathew Hirsch, for MPS I corneal gene therapy research; $25,000 to the University of Minnesota for continued core imaging research with the National Institutes of Health; and reinvested funds into Abeona Therapeutics for MPS III studies.

MATTHEW EVANGELISTA (MPS VII) Obtaining a research grant from the Society permitted a collaborative study involving researchers in Italy, New Zealand and Australia. This research was significant because it ‘scaled up’ the evaluation of a potential therapy for MPS IIIA from mice to dogs.

DR. KIM HEMSLEY

COOPER TIPPETT (MPS IVA)

8 We are thankful for the commitment of global MPS researchers. Our profound devotion through collaboration and partnerships is highlighted in these pivotal research projects:

2017 Two-Year Grant Dr. Thomas M. Stulnig – In addition, the following research Award Recipients $50,000 MPS II grants were funded in collaboration Clinical Division of Endocrinology Dr. Sharon Byers – $90,000 with our research partners: and Metabolism, Medical University general grant (over two years) of Vienna, Vienna, Austria ISMRD – Dr. Steven Gray SA Pathology (WHC site) “Metabolic, microstructural and and Dr. Charles Vite – Adelaide, Australia functional hallmarks of brain alteration $30,000 ML II/III “Can the cell cycle be reset to in Mucopolysaccharidosis type II” (over two years) normal in the MPS growth plate University of North Carolina chondrocytes?” 2016 Second-Year Grant Funding and University of Pennsylvania Prof. Elvira De Leonibus – “Evaluation of adeno-associated Dr. Lachlin Smith – $50,000 MPS III (over two years) virus gene therapy in the feline $40,000 MPS VII Telethon Institute of Genetics model of Mucolipidosis II” University of Pennsylvania and Medicine Matthew L. Hirsch – Philadelphia, PA Pozzuoli, Italy $50,000 MPS I “Therapeutic targeting of Wnt/ “Disease mechanisms leading (2016 Million Dollar Bike BCatenin signaling to improve bone to dopaminergic dysfunction Ride Matching Funds) formation in MPS VII” underlying behavioral symptoms University of North Carolina in MPS IIIA” Dr. Ainslie Derrick-Roberts – “MPS I corneal clouding AAV gene $60,000 MPS IVA Dr. Charbel Moussa – therapy project” Central Adelaide Local Health $120,000 MPS IIIA Lysosomal Disease Network – Network, Adelaide, Australia Georgetown University $25,000 multi-syndrome “Creating new tools for Washington, DC University of Minnesota understanding skeletal disease “The effects of tyrosine kinase Neuroimaging Core NIH Project in MPS IVA” inhibition on MPS IIIA mice” Dr. Kazuki Sawamoto and Dr. Chet Whitley – $50,000 Dr. Shunji Tomatsu – MPS IV (over two years) $35,000 MPS IVA University of Minnesota Nemours/Alfred I. duPont Hospital Minneapolis, MN for Children, Wilmington, DE “Neurocognitive and neuroimaging “Pathogenesis and management of of Morquio syndrome – MPS IV” life-threatening tracheal obstruction 2017 One-Year Grant in Morquio A syndrome” Award Recipients TEAM MPS AT THE MILLION DOLLAR BIKE RIDE, PHILADELPHIA, PA Dr. Igor Nestrasil – $60,000 MPS I Department of Pediatrics, University of Minnesota Minneapolis, MN “Probing oxidative stress and neuroinflammation as potential therapeutic targets in MPS I”

9

FUNDRAISING COMMITTEE

COMMUNITY SUPPORT WILL ALWAYS BE THE KEY to raising funds, and we are thankful for everyone who helped support our walk/run and other fundraising events. Significant national fundraising endeavors this year included national walk/run events in Minneapolis, MN, Napa, CA, and Raleigh, NC; the Annual Fund campaign; major donor visits; Million Dollar Bike Ride for MPS with a match from University of Pennsylvania; and our grants program.

We continue to embrace the fundraising evolution. With increased use of social media, we are now able to reach donors quickly with just a click.

The Fundraising Committee is dedicated to supporting our mission through the following comprehensive list of fundraising programs: family fundraisers, walk/runs, Annual Fund, major gifts, planned giving, mobile giving, Courage Pages, Champions Circle, Crowd Rising fundraisers, Combined Federal Campaign, United Way and employee giving, and corporate matching gifts and grants.

In 2017, the Fundraising Committee: • Received our seventh 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 their trust. • Supported an active membership roster of more than 1,700 members. STEVE HOLLAND AT BOSTON GALA • Raised approximately $655,000 through walk/run and fundraising events. • Increased grant writing efforts to secure new • Hosted the Boston Gala with nearly 200 attendees, sources of funding for critical research, family raising more than $150,000 for research and family support and our newest programs: Pathways and support programs. the Speakers Bureau. • Participated in the Society’s largest social media • Raised $176,000 through the 2017 Annual Fund fundraiser through Markiplier online, raising more than campaign, chaired by Luis, Angela and Anyssa $100,000 in one day. Guajardo. • Secured more than $110,000 for MPS research in • Continued efforts to meet with major donors and partnership with The Ryan Foundation and University Society friends. of Pennsylvania through the Million Dollar Bike Ride. • Hosted 50 Courage Pages (customized, informative • Hosted three national walk/run events in Columbus, family web pages for awareness and fundraising) on OH, Napa, CA, and Raleigh, NC. the Society’s website. • Successfully implemented mobile pledging at the • Received Combined Federal Campaign application Annual Family Conference. approval. • Supported more than 50 family fundraisers, including: • Worked with donors to process more than 250 Employee sports tournaments, cycling, bake sales, bowl-a-thons, Giving Campaign and corporation matching gifts. 10 concerts, jeans day, bingo, auctions, school relays • Increased awareness for the Rising Sun Legacy Circle and more. and processed new planned gifts from trusts and wills.

Members of the MPS Champions Circle generously support the Society by making a monthly recurring donation. 2017 Champions Circle

Jennifer Bishop Melany Bjorkman Toni Bowen Marc and Beth Brdar Lola Gindrat MINNEAPOLIS MADNESS WALK/RUN Steve and Amy Holland Jennifer Hutcheson RAY MILLER AND MARK DANT, Charles and Roberta Kachel MILLION DOLLLAR BIKE RIDE While we have seen great progress in Lori Lazarescu treatments, there are still no cures and Lauren Louison many forms of MPS still do not even have Donny and Molly Merrill treatments. Through our fundraising Eric and Amber Mongan efforts, we hope to continue to raise Susan Murphy awareness of MPS, and fund research so that one day there will be treatments Rev. Ted and Kathy Nace and cures and other parents will not Linda Perrella have to see their child suffer with this Adam and Jennifer Schepis terrible disease. Sarah Aaserude and Todd Waddell RAY MILLER (host of Do It Fore Dan fundraiser)

Courage Pages www.mpssociety.org The following families have their own website through Courage Pages at the National MPS Society. Whether hosting an event or raising awareness for MPS or ML, these custom pages are an effective way to reach donors and help enhance fundraising efforts, with no expense. These inspirational sites can be found under the “Give” section of the Society’s home page.

Evan Abel Faith Heard Analee Perez Ashley Allen Holland family Raymond Pinchak Aaron Athy Michelle Hopkins Hudson Roman Hunter Beam Analynn Hughes Christopher Sanchez Ryder Belisle Fiona Humphrey Elijah Story Colin Berning Kathleen Joyce Katie Swanson Annabelle Bozarth Carter Kanney Madison Thompson Tyson Brown Beth Karas Cooper Tippett Sam Caswell Eddie Kimminau Jack Todd Alan Charest Allison Kirch Trinity Walker Alex and Nick Cherrstrom Jennifer Klein Michael Whitaker Russell Julia Donahue Kraig Klenke Scotty Whitecotton Jackson Dunn-Kraus Shane McGoey Antonio Estrada Willmann Kali Gegenheimer Caleb Michalik Christian Yard Shane Gibson Danny Miller Emily Yurkins 11 Karina Guajardo Maura Mongan Roy Zeighami Makenzie and Isabella Hardesty Xavier Patton FUNDRAISING, continued

2017 Fundraising Events Facebook Fundraiser, hosted by Mask Concert for a Cure, Action for Aidan, hosted by Andrea Souza, Autumn, Brian and hosted by Dorothy Mask Brooke Carter Taundra Mortensen, Bailey Deal Michelle’s Scrapbooking Event, Lamb, Bobby Morrison, Darryl Block, Belisle Fundraiser for MPS III, hosted by Jim and Michelle Dodson Kimberly O’Kane, Kristine Klenke, hosted by Taci Belisle Million Dollar Bike Ride Leslie Urdaneta, Matthew Gibson, , hosted CaBi Fundraiser, hosted by Matthew Lemke, Shannon Smith, by Penn Medicine Orphan Disease Lynn Hopkins Shelly Maddox and Tracy Marie Center Moore Family Bingo Event Cards for a Cause, hosted by Greenberg , Amber Mongan Framingham High School Charity hosted by Spencer Moore MPS Chili Cook-Off for a Cure Cooper’s Troopers BBQ, hosted by Volleyball Tournament, hosted by , Christine Tippett Framingham High School National hosted by Beth Kramer Honor Society MPS Purple Sock Fundraiser Courage for Kristofer, hosted by , Jennifer Christianson Halk Fall Festival, hosted by hosted by Emily Viti and Darren Hohn Cross Creek Charity Golf Carla Crain Halk Neighborhood Lemonade Stand for Cooper’s Troopers Tournament, hosted by William Jammin’ for Julia, hosted by , hosted by Bagwell Andrea Felten Laura Navarre Olivia’s Senior Project Do It Fore Dan Golf Tournament, Jamming for MPS, hosted by , hosted by hosted by Amy and Ray Miller Julie Sykes Olivia Yaskus Donations in honor of Karina’s Josh’s Birthday Party, hosted by Perry Elementary School Fundraiser, birthday, hosted by Angela and Ruth Murphy hosted by Perry Elementary School Luis Guajardo Kendra Scott Party Fairfax, Scotty Whitecotton Birthday Fundraiser Ella Praise Fundraiser, hosted by hosted by Stephanie Bozarth , hosted by Kim Kris Klenke Kendra Scott Party Fashion Island, Whitecotton Team Eddie T-Shirt and Bracelet Emily’s Dance, hosted by hosted by Lynn Hopkins Fundraiser Danielle O’Connor Kendra Scott Party Houston, , hosted by Park View Middle School Facebook Birthday Fundraiser, hosted by Trisha Jensen T-shirt Fundraiser hosted by Adele Kary, Amy Jo Bruno, Kendra Scott Party Raleigh, , hosted by Casey and Jason Hurst, Kendra hosted by National MPS Society Staff Christine Tippett Gottsleben and Shaun Bach-Haynes LuLaRoe Fundraiser for MPS Thomas Jefferson Activists, hosted Facebook Giving Tuesday Society, hosted by Heather Palmer by Thomas Jefferson Middle School Fundraiser, hosted by Brittany Laine White Castle Fundraiser Markiplier Charity of the Month, , Mason and Stacy Buchanan hosted by Markiplier on YouTube hosted by Kim Huskey Williams Greeting Card Fundraiser, hosted by Allison Williams

Fundraising to me isn’t just raising money for a cause, but coming together as a group to help spread awareness. Our cause obviously is to spread awareness for MPS. This is important to us as our 4-year-old daughter was diagnosed with MPS IV last year. We have been so blessed with all the support and love we have received from family and friends. We are glad to be able to help others with our fundraiser, Jammin’ for Julia. We look forward to another amazing day at our next event. ANDREA FELTEN (host of Jammin’ for Julia)

2017 Walk/Run Events Benny Strong 5K, hosted by North Carolina National Walk/Run, Northview High School hosted by National MPS Society Jingle Bell Run, hosted by Betsy Fowler Post Office Café Walk/Run in Napa National Walk/Run, hosted by memory of Mark and Casey Lessing, 12 National MPS Society hosted by Michael Lessing Jr. Minneapolis National Run, hosted by National MPS Society NATHAN JAMES (MPS IIIA) FINANCIALS

The financial information below has been summarized for the year 2017. The Society is a 501(c)(3) nonprofit public charity. Complete audited financial statements and IRS Form 990 are available on request.

Financial Position

Assets Liabilitites Accounts payable $ 11,068 Cash and cash equivalents $ 1,078,619 Investments 2,026,563 Net Assets Contributions receivable 25,000 Unrestricted net assets 1,441,883 Property & equipment, net 9,823 Temporarily restricted 1,752,202 Endowment investments 1,130,652 Permenantly restricted endowment 1,065,504 Total Net Assets 4,259,589

Total Assets $ 4,270,657 Total Liabilities and Net Assets $ 4,270,657 Activities

Support and Revenue Functional Expenses Donations - general $ 101,749 Education - newsletters, booklets, web $ 139,952 Donations - family assistance 37,060 Conferences, meetings & travel 551,210 Donations - research 133,031 Direct family assistance & bereavement 69,206 Donations - endowment 64,710 Membership database and directory 9,933 Operating grant 637,971 Legislative 22,697 Fundraising 786,762 Research grants 579,413 Membership dues 3,178 Direct fundraising 167,201 Conference income 571,264 Personnel 487,558 Investment income 764,128 Office and equipment 51,813 Other administrative 80,886 Total Support and Revenue $ 3,099,853 Total Functional Expenses $ 2,159,869

Change in Net Assets $ 939,984

Donations–general Education–newsletters, Donations–family assistance booklets, web Donations–research Conferences, meetings & travel Donations–endowment Direct family assistance & bereavement Operating grant Membership database Fundraising and directory Membership dues Legislative Conference income Research grants Investment income Direct fundraising Personnel 13 Office and equipment Other administrative ANNUAL FUND DONATIONS

$200,000

$150,000

$100,000

$50,000

0 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 2016 2017

We were honored and humbled to be chosen as co-chairs for the 2017 Annual Fund. We have witnessed the growth of the Annual Fund over the years and know how significant it has become to the National MPS Society’s fundraising efforts. We fully support the Society because we believe in all of its main objectives: to fund research to find a cure, to support families through scholarships and grants, and to advocate for the MPS and ML community. The Society is a remarkable organization that inspires us to continue giving, fundraising and sharing our story.

THE GUAJARDO FAMILY PLANNED GIVING Rising Sun Legacy Circle

2017 was the seventh year for Planned Giving with the National MPS Society. At year’s end, 27 Planned Giving donors had joined the Rising Sun Legacy Circle. Planned Giving helps donors maximize the personal benefits of charitable giving and allows donors to make gifts they may not have thought possible. Individuals who make these gifts to the National MPS Society, whether through their estates, wills or other life-income arrangements, share a strong common bond of generosity that will provide security for future generations. Building this community of philanthropy helps our donors achieve their personal vision and desire to give.

In 2017, the Planned Giving committee: Emil Kakkis and Carol Elwell*, 2014 Jenny Soriano*, 2011 Steve McDonnell*, 2014 • Secured a large stock gift. Becky Clarke, 2011 Randy McDonnell*, 2014 • Included Planned Giving articles in e-Courage. Christa Armstrong, 2011 Austin and Stephanie • Continued stewardship with donors. Mary Starr Adams, 2012 Bozarth, 2014 Terri Klein, 2012 Ron and Barbara Crecco*, • Acknowledged two future gifts to the Society. Tracy Szymanski, 2012 2015 • Maintained a Planned Giving website to help Barb Wedehase, 2013 Cheryl Sorter*, 2015 members and friends of the Society become Brian and Kris Klenke, Pamela M. Daoust, 2016 acquainted with Planned Giving and gifts the 2013 Gordon R. Case Trust, 14 Society accepts. Steve and Amy Holland, 2017 2013 * Indicates gift has been received Some members wish to remain anonymous. 2017 CONTRIBUTORS WITH SINCERE THANKS TO OUR SUPPORTERS…

In 2017, the National MPS Society was able to provide support to families and funding for research because of the generosity of the following individuals, families, foundations, companies, groups and fundraising events. The board of directors and the Fundraising Committee thank you for your dedication.

The Society makes every effort to recognize our supporters through e-Courage and this Annual Report. The following list represents all donations received in calendar year 2017. If your name is not listed, we apologize and ask that you contact us. If we received your donation in 2018, you will be recognized in the next Annual Report.

Humanitarian Donna Blackmon Michael Schleter and Jack and Barbara Sorter ($10,000 to $1,000,000) Booster, LLC Terri Klein Spiceworks, Inc. Abeona Therapeutics Richard and Mignon Bosse Willis and Joslyn Kleinjan Stacy’s Sparkles BioMarin Brackeen Power Solutions Carl and Deborah Kruse Associated Students Bryson Foundation, LTD Dwain Camp Kristina Lanier Stevensville Public Schools Barbara and Ron Crecco Rob and Diane Cassil Larid family estate Stuart Swiedler and Marilyn and Gary Figlar Liam and Mary Cavanagh Lawrence and Peg Lessing Judy Weiss Mark Fischbach Clarcor Foundation Wes and Jill Lovell Tracy Szemanski Genzyme Corporation Donald and Susie Clark Magie Mabrey Hughes KRKL Family Charity Fund Scott and Lynn Hopkins Tim Collins Eye Clinic of The Dallas Foundation Magnolia Foundation Paul and Cara David Dorothy Mask Ryan Thigpen Sangamo Therapeutics, Inc. Jeff and Anne Denneen Matt and Stephanie Mays Thomas Jefferson Middle BOARD MEMBER AMBER Shire Human Genetic Justin and Gina Develin Joseph and School MONGAN AND ERIC MONGAN Therapies Dr. Patricia Dickson Mary McCafferty Glenn and (MPS I PARENTS) The Kennedy Ladd Kathleen Dulllesli Jeffrey and Susan Miller Connie Thompson Foundation Pat and Kathy Dunn Microsoft Corporation Leslie Thompson Dutch’s Daughter, Inc. Dr. Timothy Miller Michael and Ultragenyx Pharmaceutical Robert and Marjorie Exterior Pros, LLC William and Christine Moon Jacquelyn Thompson Austin Jr. Fairview Health Services Navarre family Julie Timmons Visionary Andrew Babcock Vivian Fernandez John Nay Timothy Schaffer Roofing ($5,000 to $9,999) Heather Weisman and Betsy and Steve Fowler Rachael Neale and Siding, Inc. Nathaniel Barr Marsha and Robert Bozarth Sofia Frisk Austin and Cheryl Noll III Christine and Brian Tippett Mr. David Beatty Stephanie and Gerald and Luella Gabriel Austin and Dorothy Noll Jr. Jerry and Lisa Todd Drs. Monika and Jack Berg Austin Bozarth Crank Gameplays Pacific Gas and Electric TSR Company Maurizio and Elizabeth Michelle and Don Churchill James Groody and Oxford PharmaGenesis, Ltd. Hugo and Marylyn Bellassai Mark and Jeanne Dant Kimberly Krehely Stephanie Peebles Van der Moer Joel and LeeAnn Bernbaum Frankel Family Pam and Richard Gross Mark and Vanguard Charitable Ross and Hilary Berning Foundation, Inc. Luis and Angela Guajardo MaryEllen Pendleton Jo Anne Vidal Biogen MA, Inc. Leslie and Marilyn Kelman Harris and Associates, Inc. Jessica Perez Emily Viti Biotechnology Innovation Lysogene Mark Haskins, DVM, PhD Matthew and Dawn Watkins Organization Joe and Jan Melnyk D. Lane and Ruth Hersey Claudia Peterson Britney and Matthew Weidert Steve and Northview High School Shawn Hitchcock Nancy Peterson Mr. And Mrs. Don and LaVonne Blechinger Pacific Western Bank John and Bonnie Hoegl Phoenix Nest, Inc. Lisa Wells Jeffrey Bridge Sam and Nancy Ramsey Steve and Amy Holland R.A. Bryan Foundation Harold and Janet Whartnaby Chris Brodmerkel The Ryan Foundation, Inc. Holland Reunion Paul and Katie Rector Amy and Klane White Tim and Stacy Buchanan John Fabick Tractor Co. Keith and Sherri Richbourg Catharine White Tracy Burger Philanthropist Veronika Johnsen James and Pamela Rogers Tom and Kim Whitecotton Susan and Dennis Burke ($1,000 to $4,999) Julie and William Johnson Cory Rollins Chester Whitley, PhD, MD Corrine Butcher 16500, Inc. Kajima Foundation Sam and Hope Saadat Hunter Wichelt Caroline Butz Mary Starr Adams Mike Kane George and Fred Wilson Marc Cabo Helen Allison Mr. and Mrs. Wendell and Athena Sarantinos Russell and Alice Witt Tom and Laura Catanzarite Amazon Smile Karen Keith Mathias Schmidt Ginger Worx Cecilton Lions Charities Andrews Transport, LP Bob and Ginger Kell Sue Shatas Jim and Amy Yard Charles River Dr. and Mrs. Mel and Douglas and Lynn Kelley Adam Shaywitz 15 Amy and Dan Cherrstrom Millie Anhalt Kendra Scott, LLC Regan Sherman Leader Clare Rose, Inc. Armagen Technologies, Inc. Kercheville Foundation K.H. and ($500 to $999) Scott Clarke Uzma Atif Kerzner Contracting Group Elizabeth Sherwood Michael and Walter and Simone Azevedo Bill and Kelly King Karen Shields Stephanee Adams Gretchen Clayton Baebies, Inc. Lawrence and Susan Kirch Stuart and Jennifer Siedman Stuart and Karin Adams Joan Cook Tom and Linda Kirch Sobi, Inc. Wayne and Angels of the Abbey, Inc. Catherine Bardsley continued… 2017 CONTRIBUTORS

Cooke Orthodontics Mark and Dana Kinslow Shirley Toenjes Elizabeth Dulzo Jan Leu David and Kathryn Croson Donna Kleinert David and An Tootill Lyndsay Dunkelberger Gregory and Susan Lock Carey and Mary Crumling Brian and Kristine Klenke Frank, Colleen, Kelly and East Dovers Educators Andrea Longston Caroline Dabney Daniel Kottak Ryan Trainor Association Donald and Karen Louden Jim and Michelle Dodson Elizabeth and Jayson Kramer Vinod Pallisseryparambil Michael Elgin Jenny and James Malavich Kathy and Paul Steven Michael Kuhl Vijayan Charles and Josephine Ellard Barbara and George Malina Dobrowolski Dawn and Philip Laorenza Sarah Aaserude and Norman Matthew Lori Manering Jani Domire Chris and Anna Leatherow Todd Waddell Ellinwood William Massa Jr. Mark Dorfler Charles and Kendra Lesta Bob Ward Tara and Jack Elston Jeffrey Mays and Nancy Dunn Wayne and Sharon Lewis Sue Weng Eileen Embree Karen Peters Carrie Dunn and Gene and Cynthia Logan Jacqueline Wilcher Thomas Ennis Kathleen Meyer Melissa Kraus Daniel and Barbara Maher Eric and Linda Wright Terry Epps Frank and Jane Middleton Nancy Siegfried and Howard and Jean Madsen Kevin and Peggy Yard Erica Conway DDS, Inc. Beverly Miller David Edwards Keith and Jennifer Marshall Adam Ylitalo Evans Wholesale Madonna Estate Carla Ellard Cooky and Howard Mays Jr. Christina Zhao Management, LLC Mont St. John Cellars, Inc. David Esposito Lynne McGrath Stacey Ewing David and Jamie Moon Everylife Foundation for Marcia Mederos Volunteer Matthew Fair Sarah and David Moore Rare Diseases Chris and ($250 to $499) Bart and Sally Finzel Karine Moreau Edward and Diane Fadden Diane Meyerpeter Janet Forde Rene and Access Communications, Dan Findley Karen Miller Maria and Steven Foshay Patricia M’Sadoques LLC William Doster and Yumi Minamoto Tim and Tish Foster Park View Middle School, Richard and Bonnie Finzel-Doster Eric and Amber Mongan Framingham High School Mukwonago Area School Claudia Ackerman Rachel Fortune Donovan and Allison Moore National Honor Society District Rosita and Junior Adams Joseph Gamble Rev. Ted and Kathy Nace Carmen Garcia-Curiel Helga Muller AG&M and the Artisan Scott Geiger Nave Newell, Inc. Roslynn and Timothy Garvin Marie Munoz Group Julie and Russell George Jacqueline Nelson Ann Goodell National Niemann-Pick Cindy and Mark Andrews Anthony Gilliano Benjamin and Greenwood Genetic Center Disease Foundation, Inc. Michael Antunes Tom and Elizabeth Neufeld, PhD Francisco and New London Electric, Inc. Lewis and Marie Babel Anne Gniazdowski Mahesh Shrestha and Yvonne Guajardo Kevin and Joe and Susan Babic Steven Grant Nancy Orendain Mary Gulledge Danielle O’Connor Ethert and Pauline Baird Rose Marie Greco Orsini Charitable Amit Gupta Gerard O’Reilly Dwight and Debbie Barkley Chaz Hallock Foundation, Inc. Laura Jean Gwiadowski Jo Anne Paterniti Andrew Bauer Kevin and Susan Hanley Jonathan Overton Rob Hagelin David and Rose Pelton Michael Beebe Paul Harmatz, MD John and Patty Pagliero August Harder Alan and Diana Pendley Alyssa Bellamy Coy Heldermon Heather Rudd and Peggy Haupt Linda and Dave Perry Best Buy Hewlett Packard Company Gavin Palmer Mark and Jane Hauser Kent and Nina Peter Jennifer Bishop Jeffrey and Judy Hittman Marc Pate Lyle and Jade Hays Michelle Pierce Bruce Bjorkman HP, Inc. Thomas and Megan Hilkey Randal Pruitt Blue Cross Blue Shield of Maggie Hupcey Vickie Patterson Zachary Hill Lawrence and North Carolina Jennifer Hutcheson PerkinElmer Dr. Christine Ho Annette Pung Amber Booth Johnson & Johnson Dan Platt Kathryn Hoff Steve and Laurel Radius Sharon Brack Jupiter Orphan Katherine Quick Ann and Charles Hogg John Raidy Alyssa Bradburn Therapeutics, Inc. Regenxbio, Inc. Deborah Hollis Dawn Rauch Michelle and Gerard Buechel Charles and The Rusnak family Todd and Jennifer Howard Heinz Holba and David Bumbarger Roberta Kachel Deborah Saeger Betsy Drew and Karine Roman Peter Burgis Carl Kapes Stephen Sample Ken Imagine John Rose Dennis Burns Phillippe Sauvage W. Andrew and Michael and Tim and Valerie Byers Patricia Schaming Lauran G. Jack Sandy Ruszkiewicz Canadian MPS Society COACH JERRY RUNS CAMP Wiilliam Sibold Jerry and Pat Kanney Rysz Storage Battery Co. Scott and Connie Carney COURAGE, WHERE FAMILIES Sieger Snow Guards, Inc. John Kappel Carmen Sanchez CAN RELAX, LEARN AND PLAY Heidi and Keith Caswell Sergio and John and Janet Kappel SanMar Corporation DURING EVENTS Douglas and Sherry Cesmegi Michelle Simonetti Christopher Kenworthy Christopher Saunders Christina Church Alex and Ivy Sinaiko Heather Kesner Mark Scaibacucchi City of Seattle Nicklas Skibby Joel and Lisa Klessens Toby Schiel Coastal Community Chris and Tina Smith Roberta Jean King Sheila and Foundation of South Mike and Barbara Smith Jason Kopecky Richard Schlesinger Carolina Maureen Snider Anne Krick Bonnie Scotto Rich Corfman Lee Stanley Carol and Thomas Kuhn Lynn Ann Sembach Katee Cotton Dr. and Mrs. Larry and Anne Kulak Dr. Elsa Shapiro Dan Counihan Mary Sweeney Amy Kunkle Arthur and 16 Creative Group, Inc. Susan Taylor John DeGennaro and Marilyn Sheekey Katherine Dabney The Center Foundation, Inc. Lauren Knudsen Megumi Shimazaki Scott George Dabney Global Genes Project Tony Larcombe Brian Shingle Ray and Dana Deangelis The R.A.R.E Project Lori Caldwell LeDoux Donna Sieve Robert Desnick, MD, PhD Sheila and Douglas and Grace Lessing Daniel Smith Emily Dovey Michael Thornton Susan Lester Heidi Sosinski Surface Masters, Inc. Sandra Barstow Glenn and Linda Delp Paul Tarnowski Mary Lou Barton Bernadette Carrasca Susan and John Demchak James Taylor Alice Basinger Laura Cassiani Laura Desmarais Susan Tobin Rita and Mike Basom Kevin Cassil Paul and Joann Desrosiers Michelle Towell Eileen Basquill Peter Castle Michelle DeTore Joan Trainor Daniel Basso Fred Cataldo Sue and Jerry Deuster Truchard Vineyards Charlie and Franklin and Carol Catalfamo Thierry and Laurre Tuot Danielle Bateman Shirley Catanzarite Elizabeth Dewaghe Jack Unruh Rene Battistone Joseph Catmull Diana DeWolf Joseph Vieira Mary and Don Beaudin Steve and Sandy Chapman Ranu Dhall Michael and Rhia Wagner Stacey Beckhardt James and Joan Charters Rachel Diana Tanya and Gordy Wahl Rick and Ruth Begell Angela Chavez Sharon and Robert Dickol Kevin Walker Frederick and Sheryl Steve and Karole Chesser Doug and Diane Diehle CAROLINE DABNEY, NATIONAL Paul and Kristin Wehrle Bradley Beltrami Division of Mark Dillon MPS SOCIETY BOARD MEMBER Eric and Michelle Weinstein Rose Ann and Jolee Benden Opthalmology Children’s Darrell and Kay DiStefano Stephen and Jane Wendel John and Alicia Bennett Surgical Foundation, Inc. Denmar and Ellen Dixon Mary Ellen Whiteman Kimberly Bennett Kathleen Childs Lisa Donahoo Mary Beth Gallagher Bill and Nelda Whiteside John and Maria Bereschak Lisa Christopher William Doughtery Thomas and Sylvia Gamache James and Elaine Wiesman Sheryl and Craig Bergquist Michael, Margaret and Laure Druetta Hector Garces William Forrest Real Michael and Danielle Berster Grace Ciacciarelli Vidmantas and Cecilia Duda Chrissy Gariano Estate, LLC Versha Bidarakoppa Pete and Lisa Cino Brian Dunton Jenny Gass Joe Williams Lorraine and Frank Bien Thomas and Melissa Ciuffini Peter D’Urso Kevin and Andrea Gates Mr. and Mrs. Hubert and Eddie Bigby Donald and Susie Clark Deborah Duvall Richard and Ronni Gates Elaine Willman John, Jenny, T.J. and Kent and Karlene Classen Nadine Dwork Georgia Properties and Joseph Winkler Molly Birmingham ClearView Healthcare Gary and Ruth Dyche Builders, LLC Troy and Deana Worth Bretaigne Black Partners Walter Ebarb Beverly Gerard Darryl and Melanie Block Ross and Belia Coddington Toni Ellard Holly and Friend Alison Blue Jerrold and Marilyn Cohen Darla Elswick Christopher Gerenser Emily Blue Linda Cohen Michele Elvander ($100 to $249) John and Lynn Gladysz Jeffrey Bodnar Margaret Cohen Engage Health, Inc. A-1 Delivery Services Donna Glenn Mike and Grace Bodura Peggy Cole Edna and William English Adam Friedman Memorial Dennis and Chris Goggins Robert and Jennifer Colgan Miriam Erdosi Fund Barbara Goss Anne Boggiano, MD Rocco and Derith Colicchia Heather Erickson Nancy Adams Lee and Tammy Gottschall Bon Voyage Travel Daniel and Christine Collum Mary Erskine Martha Adamson Toni and James Graham Carolyn and Neil Bordofsky Bob Colwell Karl Eurenius Johnda Adkins Rodica Grasu Alok Bose Kerry and Lynne Connolly John Exner Mr. and Mrs. Dean and Cassie Graves Anthony and Cheryl Bove Esther Conrad Curt and Sandy Faith Katherine Aker Andrea Gray Toni Bowen Dr. and Mrs. William and Peter Fan Ann Alden Delynn Greenfield Jim Bradley Peggy Cook Julie Faneca Lauren Alexander Tom Greiner Ann Braff Gabe and Natalie Corbett Robert and Amy Farrell Raymond and Pamela Allen Stanton and Jean Gunnells Dale and Myriam Brandt Molly O’Keefe and Tasha and Bruce Farrell Fatima Alliji Cheryl and William Guthman John and Alida Braz Timothy Corcoran Megan Fass Alves & Martinez Physical Rita Haan Sarah Brennan Ronald James Core Geraldine Faucett Therapy Felynn Haberecht Tom and Suzanne Brennan Elizabeth Costa Phyllis Feibelman Robert and Joanne Ames Carol Hack Dawn Brewer-Reilly Costco Margaret Ference George and Gail Anderson Laura Hahn Ward and Judy Britt Travis Coulter Emilio and Ralph and Martha Anderson Christy Stephens Frank and Dianne Brocato Dora Covarrubias Hanaueva Figueroa Tara Anderson and Jerry Hall Daniel and Debra Brockman Gary and Judith Cox Hildegard Penhallurick and Cynthia and Randy Anhalt Norman and Nancy Hall Beth Brooks Gerald F. Cox Joseph Filebark Elena and Desiree Hallock John and Judie Brooks Creative Dental Designs Alan and Julie Finley Philip Anischenko Kristina Han Richard Brown Cresson United Methodist Tim Finnegan Daniel Apostolico Addie Hanebury Vince Buccellato Church Michael Fischer Betty and Joan Hanebury Bill Buckley Bob and Denise Crompton Stephanie Fischer Barney Arceneaux Diana and Michael Hanson Frank and Ellen Budzien Karyn Cronin Barry Fitzpatrick Peter and Diana Argeres Erin and Eric Hanson J.T. Buice Jasmine and Greg and Sarah Fletcher Sharon and Rodney and Donna Hardy Bill Bulger Emmanuel Cuffee Tricia Flower David Armendariz Natasha Hargrove Mark and Leslie Bundy Noel Cuffee Steve Foltz Mary Arnholt Kimberly and Frank Harker Donald Butler Kathleen Daigle Lennie Forkas Colleen and Shawn Arni Melissa Harman Mr. and Mrs. Richard and The Dalburg family Cynthia Fossum David and Stacey Aronson Johanna Harmeier Sue Cadena Michael and Natalie Dalton Ronald and Sheila Francis Steven Ausband Patricia Harmon Michael and Karen Calhoun Bill and Laura Dapper Thomas and B & M Trailers, Inc. Jason and Gregory and Therese Calvelo Nicole Davis Barbara Francisco B.E. Warfield Contracting Rebecca Harrington Tony Cano Kelly Deangelis Tina Frank Kathleen Bailey Mark and Keely Harris Thomas and Louis Debarberie Nomi Freed Bair’s Tree and Lawn Service Lisa Harrison 17 Kristine Cantwell John and Amelia DeFilippis Denise French Sandy and Randy Ball Mark Harrison Kyle Carbert Daniel and Sheldon and Mark and Alberta Balliet James and Kelly Hart Cheryl Sena and Peter Cario Catherine Delgado Jacqueline Friedman Joseph and Bernard and Betty Harvilla Bob Carpenter Evie Dellaratta Jennifer Friedrich Jacqueline Balukin Shelby and Tim Haslett Carpets Unlimited Del-Max Restaurant Supply Lee Ann Fulmer Margaret Barry Jeni Hasselbrack Jeffrey Gabriel

continued… 2017 CONTRIBUTORS

William Hauselt Ramalakshmi Kandasamy Olivia Lippens Patricia Mioduch Barbara Peterson Holly Hayes Jennifer Kapes Chris Little Nikki Miranda Charles Phelps II and Michelle and Steven Hayes Joan and Marvin Kaplan Donna and David Littrell Aaron Mitchell Jeannine Hatt Phelps Andrea Haynes Sarah Kardashian John and Millette Litzinger Lisa Mitrovich Kimberly Phillips Heather Heil Hye-Ok Karlson Jennifer Lizotte Robert Mocas Vernon and Patricia Phillips Kimberly Heiling Stephen Karlson LLR, Inc. Cameron Mojahed and Patty Phillips Sarantinos Susan Heimbuch Raimund and Inge Kasner Sharon Lockhart Kim Wiegman Holly Piper Alice E. Heitmeyer Lindsey Kasnick Koen and Pat Loeven Robert and Neal Pitts Ed and Trish Hendel KBTX/KWTX Waco Kathy Lohr Katharyn Molinaro Frank and Nita Porter Curtis Herbert KCFI, Inc. Beth and Nick Lombardo Judith Momenzadeh Alan and Kathy Portnoy Renew Mark and Scott Keaton Michael Longo Richard and Eva Morgan Susan Powers Darlene Hesprich Daniel Kehoe Carolyn Loomis Robert Morgan Gail Prestigiacomo Kathleen and Lindsay Keller Valerie Lopez Patricia and Scott Morris Cindy Preuss Michael Heymans Stephen and Kristen Loughmiller Zachary and Dawn Morrison Tracy Price Glenn and Gwen Heys Mary Jo Kennedy Jessica Lovitt Ron and Chris Morrissey Kim Proffitt Tracy Higuera Ardis Ketterer Chuck and Nancy Lukondi Shelly Muldoon Lewis and Salli Pung Robbin and Anita Hodgkins Leslie and David Kim Jim and Doris Lupardo Dennis Mulhaupt Sarah Pursell Melissa and Brad, Jeni, Eddie and Judy and Donald Maas Francis Mullady Barbara and Keith Pushee Christopher Hogan Makena Kimminau Donald B. MacMillan Jodie Muller Charlene Quinn Paul Holder Alan and Kathleen Kimura Frances Maffitt Michael and Anita Muonio R.C. Bigelow, Inc. Todd and Joann Holgan Patrick Kinsella Jeff Magee Cheryl Murgia Kevin and Carolyn Raleigh Peggy Holland James and Donna Kirby Carolyn and Brian and Virginia Murphy Ralph and Marva Ramsey Rick and Amy Holland Joseph and Jean Kirby Michael Managan Susan Murphy Vanessa Rangel Miller Charles Holloway Nancy Kitko Don and Carol Manning David and Cathy Musselman Sue Rattman Tom and Jackie Holt Jenny Klein Martin Mans Robert Myers Tina Ratto Thomas and Susan Hope Paul Klimitas Gary and Lana Marble Susan Narducci Bernard Ray Joe and Tina Hopkins Knowbility, Inc. Eileen Marchica Carol Nareski Patrick and Brittani Ray Melody Hopkins Ivan and LeAnn Koblitz Peter Margolis Sivakumar Natarajan Celeste and Stephen Raydo Charles and Barbara Arnold and Wendy and Peter Margolis Curtis Natham Edward Rebar Georgia Horrocks Richard Kochanski David Marshall Jr. Nautilus Family Fitness Carol and Stuart Reed Lou Howard Fred Koehler Devin Martignoni Ross and Shawna Nelle Paula Reeves Paul and Laurie Howard Margaret Kruse Clayton and Iva Martin Gregory Newell Tina Reid Patricia Hudson Mary Ann Kruse Robert and Andrew Noll Jeffrey and Deb Reinke Julie Hue Mary Colleen and Keith Constance Martineau Gerald and Lynn Noll Erin Renaudin Kaye Hughes David Kruse Ernie and Sherri Massa Anne Novak Bonnie and Ralph Rennaker William and Stella Kruse Philip Massa Kevin O’Conner Carol Reynolds Margaret Hughes Dan Kulbieda Conor and Dania Massey Marsha O’Hare James and Marc Reynolds Jesse and Sheryl Hughes Jerry Kulpa Bill and Laurie Matchneer Mary Anne Oliger Richard and Carol Riazzi and Sue Wharton Christa Kurtansky Tammy and Dale Matsubara Rosemary Oliveira Donna and John Richardson Terry Hunt-Costacos Louise Langley Debbie May Thomas and Horace and Casey and Jason Hurst Mrs. Catherine Latella Joyce McCauley Barbara O’Malley Carolyn Richbourg Mr. and Mrs. Frank Hyde Jr. Bruce and Judith Lawson Scott and Evelyn McClelland Thomas and Peggy O’Malley Douglas Richmond Rebecca Intfen James and Kristina Leamer Stephen and Marie McClurg On the Rocks Bar and Grill Judith Ries Kathleen Isaacson David Lebec Chester and Glenn and Cara O’Neill Patricia and Jim Rigby IWCO Direct Mary Lee Beth McCormick John and Kathleen Opitz Rick Rineer J.E. Malone, Inc. Ron and Naomi Lee Colleen McGuinness Jason and Christi Ormeroid Ron Rineer Lance and Julia Jackson Eric Lefkof Michael and Kim McGurk James and Mary O’Rourke James and Mary Risbon Nancy Jaminet Danny and Sally Leinen Laura McKeever Brian Orsetti Denise Jarrell Tom and Martha Lemieux Donn and Dana McMahan Eileen and Larry O’Steen Larry and Joy Jeffers Lemon Drops Apparel William and Karen McNeil Dorothy and Ralph Ostella OCEAN KELLY (MPS VI) Christie Jennison and Gifts Raymond and Michael and Evelyn Ostella Jennifer Jensen Kris Lenk Amanda McPartlin Regina Osterhoudt Trisha Jensen Monica Leone and Family Maureen Meechan Tom and Barbara Palmer Dean and Stephanie Johnson Joan and Mark Lessing Eric Meier Jeanne and Bruce Palzer Jennifer Johnson Kimberly Leveaux Jason Meier Andrea Papa Kevin, Beth, and Janine Levitch Patricia Meier Kathleen Papazian Lindsay Johnson Kay and Joel Levy David Melian Alison Parker Robert Jolly Jeff and Simone and Cole Melo Shana Parker Mark and Brenda Jones Caroline Lewandowski Mark and Jacquelyn Mericle Angela Partisano 18 Junior Womans Club of Michael and Shane Mericle PASCO Hilton Village, Inc. Karen Lewandowski Dianna Messenger PayPal Giving Fund Anthony Justice Barry and Barbara Lewis Cindy and Kent Miller Paula and Fred Pedro Krista Kabacy Gib and Sandra Lewis John and Rosalind Miller Teresa Peecook Cristy Kaer Josh Lewis Sandra Miller John and Janelle Perry Mr. and Mrs. James and Kathryn and Hai Lieu Patrick Milligan Perry Elementary School Mary Kalteux James and Debra Lindsey Bertha Minnihan Thomas and Stacy Peters The Northside Tavern, Inc. Workday, Inc. Wendy and Matt Boyrie Maureen and Mary Ann Wozniak Brandy and Beau Bozarth Jacobus Theunissen Ashley Wright Allison Bradbury Donald and Sally Thompson Lorain and Charlie Wyse William and Melanie Brady Timothy and James and Carol Yard Melanie Brannan Gretchen Tierney Robert Valone and Joanne Brennan Daniel and Eleanor Tobin Janice Yates-Valone Jessica Lynn and Hope and Scott Tompkins Joe Yee Darlene Brogdon Gregory Tonn Gilda Youdeem Eugenie Brown Jon and Ellie Totz Christopher Young Matthew and Kara Brown Jennifer Trainor Richard Zachariason Delbert and Jody Brownfield James and Bonnie Tully Doris Zigler Bruart Collision MICHELLE HOPKINS (MPS I) AND ALLISON WILLIAMS (MPS I) AT Two Rivers Golf Club Evelyn Zohlen Robert and THE MINNEAPOLIS MADNESS 5K United Auto Workers Marianne Brulhardt Local 3058 Donor ($26 to $99) James Buchanan Thomas Unruh Robert and Patricia Aaserude Paul Buencamino Sagar Vaidya Richard Bunce Jenn Robart Bruce and Sherrie Simpson Bob and Caryn Ahern K. Neil Van Dine Larry and Myrl Burdett Norman and Glenera Sisson Jody Allen Marcie Van Splinter Edd and Ruth Burleson Carol Robinson Suzanne Skasik Jaya Allken Raul Vela James T. Burtnett III Sherrie and Tony Roman Priscilla Slaven Daniel Anderson Rodolfo Vela Burt Linda Burtt Carl and Donna Rose Douglas Slawson and Timothy and Michelle Annis Helen and Bill Vespe Caroline Burum Kerri Rose Linda Lepeirs Cona Anwer Sent and Mary Visser Melanie Butler-Fauthier Michael Ross Robert and Cheryl Slowey Barbara M. Arbo Michael and Carillee Vitone Susan Byers Max and Denise Rothschild Julia Smith Richard Astarita Emma Vocaturo Timothy Byers Adam Rowe Kris and Eric Smith Janine and Mary Beiting and Christina Cain Keith Rowe Linda Smith Edward Augustine Jr. Jeff Von Handorf Andy Calhoun Dr. Richard Rowe Stephen Phillip and Jen Ayles Robert and Amy Voso Lyndi Calhoun Hickman and Sara Catherine Smith Sonia Azim Lewis and Pamela Waber Jerry and Charlotte Campbell Carey Rowland William Smith Marissa Baclig Beverly Waddell Nicole Campuzano Brian and Jim and Andrew and John and Shirley Wake Keith and Jennifer Cantin Stephanie Rubinstein Tammy Smitherman Heidi Bahmueller Stephen Wakemen Liching Cao Suzanne and Ronald Ruchti Terry Snavely Max Bako Scott Wallace Anne Capodilup Arnold and Diane Rudman Marilyn and Willard Sniffin Nancy Barbash-Lerner Zhanzhi Hu and Pei Wang Elizabeth and Joseph Caponi Jim Kremers and Daniel Soliday Loryn Barbeau Amy and Allen Wardell Sarah Carey Sally Rullman Michelle Sorensen Corazon Barcelona Brian and Onna Warfield Kathy Carlson Candice Rutherford Suzanne and Jan Sorige Leonard and Barbara Kenneth and Victoria Warner Dave and Roger and Cheryl Ryan Joshua and Sheri Sowden Barcousky and family Lori Waterman Deborah Carpenter Megan Saar Joanne Spiessbach Amy Barkley John Waters Brooke Carter Stacy Sadler Anna Spriggs Mary Ellen Barringer Steve and Martha Waters Jessica Carter Brett Sager Bob and Susan Steiner Patricia Bates Kiran and Kyle Weaver Judith Carter Greg and Andrea Sanchez Mark Steudel Hank and Carol Battjes Mary L Webb Kevin and Kathryn Casey Victor Santoro Don Stewart Baylor Trucking J. E. Weigel Maria Castillo Ed Schmidt Jeremy Stewart Alice and Ron Beam Kolleen Weihrauch Nancy Celentano Jim and Judy Schneider Kenneth Stewart Sharon Bencivenni Michelle Wells Center Academy William and Jay Stickles Robbie Benson Wengers of Myerstown Gregg and Pamela Schoppmeyer Dario and Kathryn Stoka Michelle Berg White Castle Purchasing Co. Christine Chapman Emily Schrock Meredith Stone Daniel and Christine Bergin White Castle System, Inc. Lewis and Ann Chapman R. Allen Schubert Antoinette Stonefield Don and Nina Bergquist Darrell Whittle Andrew Charest Larry and June Schultz Edward Strassman Linda Bergquist Beth Widmark Jamie Chmielewski Mike Schwarz Richard and Gail Straughen Barbara Bernhard Ron and Kim Wiest Barbara Christman David and Diane Scotting Strausstown Lions Club Lisa Berry Thomas and Kathy Will Barbara Clark Roberta Scoville Alan Streeter Tony Bertauski Erik and Heidi Williams Saundra and Larry Clark Matthew and Jeffrey and Gary and Louise Bezecny Jessica Williams William Clarke Christine Seabrook Margaret Stroehlein Darci and Josh Bible John and Ellen Williams Lisa Clemence Venelina Sekulova Pauline Stukus Lucy Bickford Kim Williams Dorothy and Tilford Cobb Joann Sellmeyer Michael and Dr. and Mrs. B.L. Bickham Rick Williams Greg Cobb Brian Service Candace Sullivan Lisa Bittner Julie Willoughby Nancy Cole Bruce Severance Laura Survant Kendra Bjoraker Gordon and Cheryl Wingate Rick Cole Dennis Shelly Kim and Bill Swartz Melany Bjorkman Michelle Winkler Edward Conner Tom Cleaver and Banba Swicker Lipton Katelyn Marie Blackman Denise Winn Therese Conner Mary Shine Noel and Nancy Talcott H. Robert and Shirley Wirkler Kimberly Cook Sean Shockley Robert Maiden and Nancy A. Blake David and Cristela Wise Leonard and Marilyn Cook Patricia Shore Becky Tanamachi Judith Blix Kristina Woessner George and Sharon Costa Toby and Stephanie Short Target Corporation Mary Bodendorfer 19 John Womack Joyce Cotton Rosemary Shourds Kari Tarvin Thomas and Diana Boland Women’s Association of Karl and Anna Coulson Gary Shovers Robert and Anita Taulton and family the NFLD Golf Club Katheryn Cox Brian Shripka Daniel and Valerie Teitsma Monica Bolin Jo Ann Wondra Kirsty Cringan David and Rebecca Silkey Michele and Tony Teoli Rene Bond Victor and Vivien Wong Marilyn Simon Nikki Terry Greta Boudreau Susan Woodward continued… 2017 CONTRIBUTORS

Matthew and Patricia Croyle Steven and Robert Grove Cindy Holmes Clint and Nikki Kremer Cristina, Courtney and Kathryn Espenshade Andrea Guajardo Mark Hopkinson Stephan Kroski Calisi Cruz Marissa Espinoza Elizabeth Guerino Lisa Hostetler Anca and Önder Kustu Marie Cundiff Andrew Evridge Phil Guevara House to Home Design Fred and Jennifer Landon Peter and Kimberly Cunneen Marina Falaleeva Thomas Gugel for Living Corp. Julie Lange Lisa and Helen Fallon Kevin and Jackie Gull Dan Houx Karen Larson Robert Cunningham Pamela Farthing Maureen and Lois Howard Erik and Christina Lawrence Lyndsey Cunningham Linda Fern Fay Brian Gunderson Bonnie and Frank Howarth Robert and Katie Lawson Steve Cuomo Latoria Fears Diane Gunn Connie Howe Annemarie Ledeboer Ryan and Kelly Curry Carl Felten Dawn Gurule Susan Hubbard Kenneth and Sandra Ledford Curtiss-Wright, Inc. Juan Figueroa Sherry Guye Alma Huber Michele Leestma Diane Dalton Brian and Kathleen Finn Jennilee Ha Marie Hughes John and Linda LeJeune Jennifer Damiani Barb Fisher Norman and Stephen and Kathleen Hurst Bill and Sandy Lemcke Sherry and Rick Dandrea Valerie Fitzpatrick Diana Hageboeck Marshall Huston Sarah Lenneman Brooke Dannen Susan Flaherty William and Elizabeth Haley Nicole Hyder Robert and Bobby and Kelly Daquara Mr. and Mrs. Richard and Audrey Hall Robert and Maribeth Letourneau Jodie Bouchon and Cheryl Fletcher Michelle Hall Marguerite Iannacone Johanna and Nathan Levene David Marshall Andrew and Joan Flynn Sheryl and Gerald Hall Linda and Allan Iezzi Gary and Maureen Levine Darin and Lisa Davis Laverne and Peggy Foess Linda and Stephen Halliday Kourosh and Ann Lewis Linda and Dan Day Mary Fornip Lisa Hamborg Leticia Iranpour Morgan Lewis Russell DeKelver Cindy and Nathan Forrest Devoria and Kevin Hamilton Allison Irete Sarah Lewis Steve and Fort Plain Teachers David and Cathy Hamm Jack and Barbara Irvin Scott and Gabriella Lich Alanna Delacrausaz Association Renee Hammond Maria Jacobson Kim Lichtenecker Judith Dellara Frances M. Fournier Donna Hamstead Roger and Cynthia Jahnke Chris Linderson Ellie DeLoreto Jamie and Jason Fowler Joseph and Eileen Hands Julianne Janas Mark Lipe Claire Demarco Donald and Betsey Frankel John C. Hanley Joanna Janssen Jenn and Jamie Lipscomb Sandra Demello Cassie Fraser Kathleen Allen Hanley Justin Jessee Kathy Lister Avi Demirdjian Duncan A. Fraser III Gary Hanson Max and Ruth Ann Jewell Jennifer Long Tom Denham Paulette Frichittavong Billy and Diane Hardison Debra Johnsen Jerry and Beverly Long Kari DeSoto Mark and Marie Frost Deanna and Eldon Hardy William Johnson United States Felipe Lopez Joellen Devitis Adrienne Fry David and Beverly Harper Alicia Jones Lee Louden Sheila DeVolder Nicole Frye Kim and William Harper Kiran Joshi Alayne and Patricia Dietz Anna Funkhouser Jeffrey and Barbara Harrell Julianne Jyachosky William Lowenberger Margaret Dilkian G & F Carpet, Inc. Glen and Nancy Harris Jeneba Kaikai Vanessa Charlton Dennis and Ann Margret Gabriel Kimberlee Harrison Pascale Kallassi and Lularoe Vanessa Linn Mary Ellen Dillman Michael Gammon Ronald and Janis Harvey Heidi Kanealy Kathy Lutz Margaret Dixon Daniel and Robert and Sharon Haske Joseph and Michelle Karl Michael Maass Kevin Do Sarah Jane Garcia Mike and Sherry Hatfield Matt and Deanna Karlson Warren and Hilda Brian and Jennifer Dolan Selene Garcia Kathryn Hawkins Zachary and Steiner Macdonald Jr. Jonathan and Lisa Dols Therese Gass Drs. D.T. and Elizabeth Karsten Lori MacPherson Megan Doran Thomas Gebbia Shannon Hayes Gloria and Irwin Katz Jason Madison Christine and Michael and Marcia Geller Dr. and Mrs. Larry and Kelly and Charles Kavanagh Sharyn Madison Raymond Downey Anna Gendreau Barbara Hays Margaret Keating Michael Mahlan Jeanne and Maurice Drew Genworth Foundation Shawn Healy Sean and Elizabeth Keely Majestic Dental Designs, Inc. Traci Drexler Cheri Gey Brian Hedges Jeff and Jacque Keeney Joseph and Jeanne Mallia Russell Dugoni Pouya Gharavi Jennifer Hemingway Daniel Kehoe Susan Mandilag Matthew Dunn David and Lorina Gifford Simon Hemmings Jeffrey and Stephanie Kell Margaret Mann Kenneth Duong Dennis and Sharon Gillham Tracy Hempel Robert Kelley Bill and Eileen Manthe Julie and Bryan Durnen Eileen and Bob Gittins Joe Hendel Julie Kelly Elmer Manuel Meredith and Joseph and Terianne Giuliani Lawrence Hendel Timothy and Karen Kelly Thomas Durrett Betty Glock Anastasia Henry Jackie and Tiffany Kemp William and Carolyn Eames Kathy Godegast Scott and Tracey Herber Rian Kessler LUKE SARANTINOS (MPS IIIB) Russell and Debra Eberwein James and Ida Goetzinger Chester Herbst Keurig Green Mountain, Inc. Joe and Ruby Efird Ehud and Orit Golos Buzz Hernandez Lisa Khavkin PRW Wealth Management, David and Marsha Gorewitz Dorene and Frank Herzog Denetra Kendrick LLC Elliot Herman & Payne Raymond Gorka Susan Hess Jeri and George Kievlan Mike and Theresa Ellmo Georgia Goss Susan Hewitt Amy Kielwoski Mark Elmer Douglas and Michelle Higgins Helen Kirch Grant and Mieke Embry Michele Graham Terrence and Patrice Hines Konrad and Teresa Klechta 20 Regina Emmitt Len and Sue Grant Christie Hobart Joyce Knipfing Brian Engel Robert and Viji Grant Wayne and Carol Hobson Gina Knudsen Kathy Engelhard Joanne Gratiot Joline Hodges Sarah Koenig EP J Holding Corp Kelly Gray Frederick and Kathleen Hoge Louise and Ed Kofron Roberta Erlichman Myra Gray William and Eileen Holden Bill Kolar Jennifer Ermoian Juliana and John Grayson Scott and Angela Holland Kolbe’s Pools and More Kenneth and Judith Greengard Mary Holley Neil and Terri Korte Ruth Espenshade Michael and Sandy and Gerald Rocker Marla and Randy Stevens Charmaine Palmer Lonnie and Sandra Rodrigue Michele Steward Linda Panzica Dave and Janet Roessner Darla Stewart Rhonda Pare Brandon and Corinne Roig Dina Stewart Michael and Veronica Parisi Rooted in the New London James and Pat Stoffel Alison Parker Marketplace Stacy Stone Lucy Partridge Brenda Roper-Riley Isaac and Brooke Story Michael and Ellen Rose George and Margaret Pashen Marian Ross Elizabeth Stragand James Butler and Alice Rowan Don and Deirdre Strassman Patricia Loeffler Lynda Rowe Nancy Stringham Ashley and Brian Pearson Paul and Elizabeth Royer Jean Stull NATIONAL MPS SOCIETY BOARD MEMBER KIM WHITECOTTON Laura Pelegrino Collette and Lawrence Ryan Christine and Troy Stultz PARTICIPATING IN THE 5K RUN/WALK John Pelham Nancy Ryan Danny Sullivan Linda Perrella Paul and Kathy Rysz Alyse Summers Mr. and Mrs. Juergen Peters Sushil Sagarwala Terri and the Western Team Jerome Manuel Chris Minks Susan Peters Johanne Saichek at Sun Life Financial Audrey Manzanares Jamie Mistretta Cecil and Janice Peterson Randy Saitta Eugenie Super Mary Marcotte Keith and Kerri Mitchell Norman and Anthony and Jack or Kathleen Sutton Steve Maricich Kelly Mittelstaedt Elizabeth Peterson Rose Ellen Salerno Laurel Swanson Sara Marincic Lynn Moffett Robert and Nancy Peterson Alyssa Samrick Caroline Sweedo Bob Marion William Molinari Ngan Pham Franquito and Carol Sanchez Bill and Lisa Sweeney Rose Marquez Gary and Carol Moll Jack and Beverly Phillips Daisy Santiago Donald and Rachel Swicker Rebecca Marsh Hd Moody Janey Piggott Evangelina and Jeffrey Tall Jan Marzan Ashley Mooers Joseph and Patricia Pizzano Sammy Santos Michael Talles Kenneth and Terry and Joy Morgan Alan and Brenda Plassche Olivia and Allen Sass Roland Tamayo Shirley Ann Mason Cassandra Morley Beth A. Pletcher, MD Tarriss Saurer Brian Tartufo Marilyn and Paul Massaro Shelley Morse Richard Plona and Elaine Hendricks and Bryan and Rene Taylor Kaitlyn Mathews Audrey Morton Janis Ahlstrom James Schaefer Jr. Susan Taylor Melanie and John Mountain Lynda Polgreen Nadine Schaefer Traci Taylor Nicholas Matschiner Susan Muras Dr. Katherine Ponder Andrea J. Schatz Shawn Teamann Christine Matulich Brian and Deborah Murphy Heather Pope Adam and Jennifer Schepis Pamela and Dana Teich Michael Maxwell Heidi Murphy Lauren Pope Karna and Bill Schiltz Mr. and Mrs. Ross Terry Carol and Darren May Maryrose Murphy Peter and Donna Porcelli Judy Schirripa Donald and Lynda Thaler Rodel Mayuyo Jon Musselman Tom and Carrie Porzel Bert Schoenkerman Jackie and Allen Theriot Thomas Mc Sherry Terese and Richard and Linda Post Catherine Dorn Schreiber Erica Thiel Robert and Debra McArdle Jonathan Musselman Angela Powell and Peter Schreiber Larissa Thomas Matthew McCafferty Carl and Kathleen Nagy Cynthia and George Powers Stephen Schuh Robert and Nancy Thomson Patrick McCafferty Carisa Nappi Cynthia and John Prediger Ira Schwartz Loretta and Mark and Kim McCall Sterling Nash Brenda Preheim Maurice and Michael Tomasso Ellen McCallister Dorothy Nathan Michael Puente Christina Sciammas Stephen Tomasulo Stephen and Jamie Nauheim Roberta Jean Purdum Linda Scotto Joseph and Veronica McCarthy Kathy and Josh Nay William and Tonette Seibert Christine Tomlinson Richard and Sally Newell Marguerite Putich Rick and Ann Semk Miguela Torres Denise McCary Aywon and Krystal Nguyen Rose Pyle-Thornton Seymour Pediatrics Mr. and Mrs. Robert and Anne McClelland Fred and Kerrie Nocella Mark B. Pyper, Esq. Kerry Shamaly Janine Townsley Mike and Ramona McClurg Jonas and Lauren Norinder Susan and Matt Quinn Greg Sharrits Arthur and Jennifer Tracy Wally McDonley Sue and Roger Norsted Thomas and Lisa Qvistgaard Victoria Sheehan John Traina Martin McKeever Ann Norton Stephanie and Kevin and Kathy Sheridan Joan Trainor Laura McKeithen Steve and Kim Nunley Edmund Rabuse Tess Sicat Maureen and Sean Tribby Judith McKinstry Roy and Martie Oates Erika K. Raftree Eleanor Sims Stacy Trimbo Matthew and Daniel and Pamela O’Brien Katie Ragle Sam and Judy Sims Jacqueline Troiani Shannon McNeil Katherine Odorow Shelly Raichel Ruby and Ernst Singhrao Fr. Tom and Pat Tsagalakis Joseph and Trisha and Mike Offenbacker Bridget Raleigh Anne Marie Siudzinski Benjamin Turner Kathleen McNulty Raymond and Julia O’Hara Maryann and Jackie and Joan Skinner TVI, Inc. (Value Village/ Maury Mechanick Ronald and Howard Ramshorn Lachlan Smith Savers) Julie Meltzer Starlene Okamoto Carri Randall Laura Smith Daniel Tyminski Lenard and Susie Merrell Hertha Oliva Joseph and Santina Rao Patrick Smith Thomas Uebelacker Mary Ann Messick Mitchell Olshewitz John and Debby Ratto Susan Smith Rupali Ullal Christine Meyer Steve O’Malley and Laura Rea Carol Snarey Kyle Edward Underwood G. and C. Milano Paula Manor Floyd and Sharon Reed Karol Soucy Leslie Urdaneta Mile High United Way Sylvia Opsahl Randy and Jean Ann Reed Roger and Diane Soulagnet Osmar Valdez Bradley Miller Debbie Orlando Erin and Bill Reetz Roderic and Pamela Stafford Coty Van Meter Bradley and Linda Miller Peggy and Eric Orse Kevin Reina Dana Stapley Sarah Vanwagner 21 Donald and Joan Miller Sharon and Roger Ouellette Reliant Corp. Jeremy Stearns Nancy Vardaro Eric Miller, OD, PC Kim and John Outten Paul Rendich Joie Ann and Robert Steffen Alison Varley June Miller Rose Ovalle Jose Reyes Jennifer and Eric Stein Jenny and Leo Vassar Kara Miller-Karns David Pagona April Rhea Myrna Stelman Danielle Vedder Rachel Millstone John and Marie Palladino Brian Rixon Teddy and Jeanette Velsmid Pat and Joe Minehan Joseph and Catherine Rizzo Janette Stephenson continued… 2017 CONTRIBUTORS

Mary Elizabeth Vernon Michael Yocum Debbie Bloomer David and Karen Davis Dr. Kristy Vetter Lenny Young Stephanie Booth Jessica and Andrew Davis Franco and Jane Vianello Alexander Zaleski Ray and Barb Bowman Pat and Thomas Davitt Charles Vite, DVM, PhD Jenn Zane Bruce and Nancy Braaten Merri-Ann De Luca Jerry and Sue von Handorf Janey and Larry Zanowiak Kathleen Brady Patricia Delaney Terry and Nancy Wain Ray and Priscilla Zechender Steven Brame Theresa and Vincent Delapi Curt Walder Marilyn Zeidner Tom and Lynn Branch Diane Delissio Alex and Jenny Walker Yuanyue Zhou Marc and Beth Brdar Patricia DiLuzio Linda Wallace Alma Zumaran Monique Brown Juliann and Tammie Wallace Tania Zumaran William and Mary Brubaker Robert DiTommaso Kelly and Jeff Wallis Fabiola Zuniga Martínez Constance and Catherine Timothy Donnelly Janet Walsh Andrew and Worwa Budzien William and Raymond Wang Louise Zygmuntowicz Francis Bula Mary Donoghue Tracy Wardak Angela and Roger Zylstra Robert and Carol Bullock Dorman Enterprises GABRIEL CLARK (MPS III) Bill and Kathy Wardlaw Rebecca Bumgardner Catherine Dorn Watermark Custom Patron ($5 to $25) Feleisha Bunze Bobette Downs Homes, LLC Albert and Rita Abbott Michael Burke Caitlin and Mark Drewes Eugene and Ruth Watkins Joan Ackerman Debra Burkeen Robert Driscoll Frances Goldfarb Kara Weaver Michael Adamkiewicz Barbara Burns Wenyan Du Theresa and Oscar Gomez Christopher and Kevyn and Stacey Adams Tony and Claudia Busse Douglas, Lori and Michael Graham Gayle Webber Kenneth and Donna Ahles Rosy Cahill Katie Dunbar Carl Grossbard Elke Wechsler Courtney Alban Pam Calandra Terry and Daniel and Heather Grund Michael Wechsler Joseph Alejandro Marguerite Caldwell Irene-Mary Dunbar Joel Kaji and Thomas Wechsler Pamela Alford Gina Calhoun Col. Ronald and Marjorie Ann Gurwin Daniel Weiss Elvin Alonzo Helma Calvin Karen Duncan Dorothy Gustner Brian and Jessica Wellman Emily Alves B.I. Camp William Dunn Tonia Hadley Mary Wentworth Donald and Julie Ames Pamela Canham Leroy and Denise Dupert Kay Haidary Joan Werner Dave and Cindy Anderson Adriana Caratachea Cathy Durman Jonathan and Ashley Hale Dennis Wharton Wendye Anttila Brenda Carbon Corey R. Eblen Cindy Hall Sue Wharton Auguste Areizaga Christina Carbonette Ursula Edginton Suzanne and John Hamilton Diane White Nicole Avitabile Tia Casady Geri Lynn Edwards Dan and Connie Hardesty Esther White Justin Bagoyo Donna and Elio Castellano Karla Efinger Yvonne Harman Michael and Amy White Timothy Bardong Christine Castray Susan Ellsworth Allysea Harris Sara and Thomas White Jane Barker, PhD John Chang Beth Engelmann Betty Harris Suzanne White Steve and Valerie Barnett Jacie Chatterton Joan Equale Karen and Martin Harte Aloma Whitley Irwin Barney Amy and Corey Christie John and Geraldine Euliano Taylor Harvey Raymond and Lorraine Baron Kathleen and Lori Factor Amanda Hauck Drake Samantha Whittaker Kathy and John Barr Theodore Christopher Jared and Michelr Farewell Paul Heard Thomas and Blanca Wier Sheryl Bates Deanna and Maureen Farni Sheila Hearn Ashley Wiesenburger Cynthia Bauer Fidencio Cisneros Edwin and Jane Feiler Jr. Robert Hendel William Rice and Thomas and Joan Beckmann Kirk Vogel and Ruth Clancy Jennifer Feliciano Amy L. Hennessey Lynette Wigbels Jeffery and Daniel and Teresa Clark John and Wendy Ferguson Juan and Susan Heredia Lucy Wiliford Illyona Beideman Steven and Jennifer Clarke Lucille Fernandez Maricar Hernandez Jack and Betty Willer Raymond and Sandra Bell Vicki Clayton Edward and Charlotte Ferri Marlys Herring Brian and Dolores Williams JoAnn Bello Deborah Clevenstine Lois Finney Cyndi Hildreth-Blue Cory and Janice Williams Rose Ann and Jo Ann Coan Christine Fitzgerald Michelle Hill Diane and Leslie Williams Dominic Bencivenga Kate Cockroft Sherri Fleming Sarah Hinkley John and Gail Williams Yuri Bendana Greg Cohee Cynthia Foster Michael and Linda Hirsh Joseph and Meredith Benkirane Maida Cohen Judith Frank Elizabeth and Chris Hoff Jacqueline Williams Kathryn and Mark and Kathryn Cole Paul and Martha Frank Elizabeth Hoffman Katie Willmann Frederick Benlein Ledy Colon Lawrence J. and Joann and David Holder Brad and Susan Wilson Rani Benskin Lois Conklin Stacey Froehlich Lori Holifield Sheila Wilson Eileen Berry Conneck-A-Pup John Karen Gagliardi Terri Hollmann Matt and Barbara Betti Curt and Susan Cosentino Abby Galle Ashley Holm Rachel Wojnarowski David Bigelow Countryside Animal Clinic Eudean Garces Sarah Holm John H. Wolfe, VMD, PhD Larry Bilello Frances Crake Claudia Geile Carla Horowitz Cheryl Wong Po Foo Lori Bilgrien Dan and Lisa Cremeans Arthur and Judy Horton Victor and Vivien Wong Patricia and Arthur Billings Mary Crier Joan Giammarino Richard and Misty House Jimmy and Susan Workman Kathy and Karyn Cronin Lynne Gilliland Courtney Howard 22 Dennis and Mary Worwa James Birmingham Jill Crowey Lola Gindrat Michael Howell Garret Wu Jill Bittner Theresa Curcio Paul Ginocchio Debra Hoyopatubbi Laura Wuerth Blake and Kacee Blackwell Customink, LLC Meredith Gipson Amy Hubert Judy and Mansour Yamin Michael and Patricia Blake Joanne Daleiden-Earney Linda Glas Mike and Joanne Huff Michael Yard Robert and Anita Blake Susan Danielson Geraldine and George Glass Amy Iracane Hunt Amy Yencharis Erin Blakeslee Simonne Darbonne Robert and Mary Goetz Gretchen and John Hyde Sharon Yergeau Brenda Davis Bridget Goldfarb Gabor Illei Shirley Innes Breana Leonard Tim Mulroy Richard and Victoria Santi Lindsay Torrice Ashley B. Iracane Kory and Karen Leppo Edward Murray Dr. and Mrs. A.L. and Troy Towns Tyree and Ethola Irving Robin Lewis Kevin and Christine Murray Angela Sarantinos Carl Traina T. Jackson Jennifer Lichak Howard and Sallie Namkin Allyson Sargent Mary Trainor Mary S. Jacob Adam and Sally Lieberman National Financial JoAnn Scarpelli Sherri and Alan Tribuzio Danny Jah Lynn Lilore Services, LLC Amanda Schafer Ciara Trojan Jamberry Nails, LLC Mark and Mary Linenbroker Arretta Nave Shelly Schettino Laura and Michael Tuccillo Jackie Jens Long Island Boat & Motor Isabel Ngo Rita Schimsa Joseph and Carla Turchett Denise Johnson Works, Inc. Nan O’Connor Monica Schmalz Jean Jacobsen and Jane Johnson Emily Loose Nikki O’Hara Donald and Janet Schmidt Richard Underwood Leonard Johnson Melissa Love Danielle O’Rourke Norman and Kathleen Alvin Ungar Jane Johnston Joe Luczak Michael O’Rourke Schmidt-Huffman Jennifer Urban Timothy Jonas Sharon Lyons David and Connie Osborne Gina Schmierer Kurt and Lisa Urdahl Catherine Jones James Maaba Eugene and Joe Schneider Lucy Van Wagner Ashaleigh Joudrey Matthew Mackinnon Elizabeth O’Shea Norma Schoen Jonathan Vauxhall JudesKids Arash Madani Elaine Osipowicz Sheri and Jeff Schoenwald Elizabeth Vielhauer Nicole Judnic Meghan Maier Laura Osterbrock William Schooley Arthur Villarreal Eric Bell and Judy Mellott Catherine Mancuso Tara O’Toole Chris Schuh Mary and Leon Vore Joe and Alice Kalamar Gordon Marinella Bonnie Oven Carole Scott Michael and Anita Wagner Beverly and Timothy Kan Michael and Lori Martin Samantha Padilla Washanda Seales Paul and Donna Walder Shih-Hsin Kan Michael and Penny Matthews Mary Page Bob and Carmel Seifert Samantha Walshak Kathleen Kapes Michaelle and Rachel Pagona Gayle Seletz Linda Wanat Charles Karker Wolfgang Mauch Domenick Palmeri Blair Selva Jacqueline Wanderman Gail Katz David May Carmella and Nancy Sforza Roger and Karen Wardell John Keating Kayne Mayuyo Estelito Panghulan Brianna Shackelford Jacob Waters Joan Keegan James and Cathy Parker Catherine Shaw Michelle Watson Christine and Kirk Kehrley Kimberly McClelland Mary and Mathew Parker Nancy, Kent and Julies Wazeer Pete and Jeanne Kemeliotis Neil McKenzie Beth Patrick Joe Shelton Yatil.de Webentwicklung Charles and Richard and Molly Payne Kate Shipp-Roberts James and Jean Weber Millicent Kennedy Michele McPartland Suzanne Peck Varant Shirvanian Patricia and Gerald Weiss Anna and Dave Kidwell Kevin McQuillan Sarah Pedersen Laura Shoar Ginger Wetz Denys King Kevin McSwiggan Diana Peluzzo Norma Shoen Wade Wheatlake Tajuana King Tammy Medcraft Jamie Perez Mary Shuell Kerrie and Darren Whetstone Tom and Julie Kirch Paula Medina Ambrose and Amanda Simhauser Robert Whiteside Gloria and Darin Klaesges John and Dee Medinger Patricia Perreault Kate Simmons Abigail Wickes Edwin and Ruth Klenke Trayce and Patrick Mehringer Kathleen Peters Julie Simpson Bradley Wildman Jo Anne Kong Sheila and William Meisner Barbara and Paul Skedel Rick and Rebecca Wildman Dale Kronebusch Nicholas and Harlan Peterson Joan Smith Julie Williams Jennifer Krueger Erica Mercante Jr. Jolene and Tadd Piefer Scott Smith Wanda S. Williams Linda Krupa Donny and Molly Merrill Natalie Popovici Kathy Snoke Sarah Windeknecht Rosemary Kruse-Hefti Andrew Mickelson Jodi M. Powell Andrea Souza Sheri Wise Christopher and Jaquelyn Miller Heather Preiss Casey Spahlinger Gloria Withus Sandra Kuegel Paul Miltgen Eileen and Sandra Spickler Anne Witt Richard Kulka Joseph Mitola Raymond Prussman Nancy Sprosty Penelope Witthauer Jerry and Delores Kunz Jacqueline Miraglia Virginia Pugliese Meghan Squarebriggs Marla Woodfolk Anne Lambert Lisa Moeller Robert Radeke Deborah Stehlik Jacob Wright Martin Lara Kim Mooney Benjamin Ramsey Edwin Steigerwald Stephen Yoo Missy Larson Laurie Morgan-Ross James Redenbarger Richard and William and Hallie Young Kristen Lavelle Carol Morrison Paul and Carol Redmond Colette Steinhauer Nick and Lori Lazarescu Nicole Morrissey Andreas Reik Richard and Katherine Cassandra Zarkades Steven and Elissa Lazarus Madeline and Marcos Reyes Stoll Jr. William Zega Terry and Margaret Lee Merritt Moseley Aubrey Rhodes David and Cathy Stone Frank and Linda Zeig Guy and Christine Leibstein Marissa Moss Elizabeth Rice Elizabeth Stone Chen Zhang Merril Lempin Ken and Jackie Mueller Marey Richins Larry and Diane Suhr Bob and Kate Zimmerman Carlyle and Janet Richter John and Diane Szuchy Vincent and Brittney Zito Daryl and Emma Tashoff Salvatore and Louise Zoccoli Tammy Riechmann Sima Tawakoii KATELYN BLACKMAN, LISA TODD, STEPHANIE BOZARTH Sharon Zuhoski Jodi Riedel Ford and Ellen Taylor AND CAROLINE DABNEY, BOSTON GALA Dillon Rinauro Teespring, LLC Michael and Karen Roberts Kenneth and Mary Teich Elizabeth Rodgers John Teti Sharon Romere-Nix Mary Thigpen Edna Roper Teresa Thompson Katherine Royer Tom Thornton 23 Erin Ryan James and Mari Titterton Monica Sacco Jessica Todd Patricia Sanchez Karen Tooley Krystal Sandza Lovelia Torres Rosie Sansalone Princesita Torres MPS AND ML

Mucopolysaccharidoses (MPS) and Mucolipidosis (ML) are genetic lysosomal storage diseases (LSD) caused by the body’s inability to produce specific enzymes.

MPS I MPS IV ML II/III MPSI H Hurler MPS IV A Morquio A ML II I-Cell MPS I S Scheie Enzyme/ Galactose 6-sulfatase ML III Psuedo-Hurler polydystrophy MPS I H-S Hurler-Scheie MPS IV B Morquio B Enzyme / N-acetylglucosamine-1- Enzyme /a-L-Iduronidase Enzyme /B-Galactosidase phosphotransferase

MPS II MPS VI MPS II Hunter MPS VI Maroteaux-Lamy Enzyme /Iduronate sulfatase Enzyme/ (arylsulfatase B) N-Acetylgalac-tosamine 4-sulfatase MPS III MPS VII MPS III A Sanfilippo A Enzyme / Heparan N-sulfatase MPS VII Sly Enzyme/ B-Glucuronidase MPS III B Sanfilippo B Enzyme / a-N- Acetylglucosaminidase MPS IX MPS III C Sanfilippo C Enzyme / Hyaluronidase Enzyme / Acetyl CoA: a-glycosaminide acetyltransferase MPS III D Sanfilippo D Enzyme / N-Acetylglucosamine 6-sulfatase NATIONAL MPS SOCIETY TEAM ADVOCATES FOR NORTH CAROLINA IN WASHINGTON, DC

24 BOARD OF DIRECTORS

Stephanie Bozarth / Chair Kristine Klenke STAFF Austin Bozarth (MPS II parent) (MPS IV parents) Worden, IL President and CEO [email protected] [email protected] Director of Development/Operations [email protected] Terri L. Klein Jason Madison Kim Whitecotton / Vice Chair (MPS II) President and CEO (through Oct. 2017) (MPS II parent) Seattle, WA Mark Dant Modesto, CA [email protected] [email protected] Communications Director Austin Noll Mary Erskine Lisa Todd / Treasurer (MPS III parent) (MPS II parent) Middleton, WI Family Program Coordinator Albuquerque, NM [email protected] Leslie Urdaneta [email protected] Aaron and Holly Thompson Program Director (through Sept. 2017) Amber Mongan / Secretary (ML III parents) Alison Blue (MPS I parent) Wellington, CO Eugene, OR [email protected] Family Support Lead [email protected] [email protected] Coreen Grey

Caroline Dabney Christine Tippett Administrative Management New York, NY (MPS IV parent) Katelyn Blackman [email protected] Littleton, CO [email protected] Development/Program Support Steve and Amy Holland Meredith Stone (MPS I parents) Jim Yard River Oaks, TX (MPS II parent) Controller [email protected] Mars, PA Angela Guajardo [email protected] [email protected]

SCIENTIFIC ADVISORY BOARD

Patricia Dickson, MD, William G. Mackenzie, MD William S. Sly, MD Committee Chair Joseph Muenzer, MD, PhD Richard Steet, PhD Lorne Clarke, MD Elizabeth Neufeld, PhD Charles H. Vite, DVM, PhD Alessandra D’Azzo, PhD Beth A. Pletcher, MD Steve Walkley, DVM, PhD Robert Desnick, MD, PhD Lynda Polgreen, MD, MS David Wenger, PhD Matthew Ellinwood, DVM, PhD Kathy Ponder, MD Klane White, MD Paul Harmatz, MD Mark Sands, PhD Chester Whitley, MD, PhD Mark Haskins, PhD, VMD Edward H. Schuchman, PhD John H. Wolfe, VMD, PhD Kim Hemsley, PhD Calogera Simonaro, PhD