“It's Only Rare…Until It's You”
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FOUNDATION REPORT 2016.2017 SUPPORT EDUCATION RESEARCH ADVOCACY SUPPORT EDUCATION RESEARCH ADVOCACY “It’s Only Rare…Until It’s You” LEADERSHIP Board of Directors President’s Council Global Medical Advisory Board Jim Crone, President Jerry L. Jones Matthew LaRocco, Vice President Kim Koehlinger Kenneth C. Gorson, MD, Chairman Patricia H. Blomkwist-Markens, Philip H. Kinnicutt Bart C. Jacobs, MD, Vice Chairman Vice President of International Activities Ronald B. Kremnitzer, Esq. Jeffrey Allen, MD Susan Keast, Treasurer Ralph G. Neas Vera Bril, MD Russell Walter, Secretary Diana Castro, MD David R. Cornblath, MD David R. Cornblath, MD K. Robert Doehrman Honorary Board Peter D. Donofrio, MD Elizabeth Emerson John D. England, MD Kenneth C. Gorson, MD Arthur K. Asbury, MD Jonathan Katz, MD Gail Moore Sue Baier Carol Lee Koski, MD Joel S. Steinberg, MD Henry Freedman* Richard A. Lewis, MD Marilyn Tedesco Thelma Gifford Robert P. Lisak, MD Jim Yadlon Angelica Hahn, MD Eduardo Nobile-Orazio, MD, PhD, FAAN Dominick V. Spatafora Professor Richard A.C. Hughes Gareth J. Parry, MD Shane Sumlin C Walter Nichols, III David S. Saperstein, MD Glennys Sanders Kazim A. Sheikh, MD Executive Director Joel S. Steinberg, MD, PhD Lisa Butler Pieter A. Van Doorn, MD Professor Hugh J. Willison, MD, MBBS, Founder PhD, FRCP Estelle L. Benson Gil I. Wolfe, MD, FAAN *Deceased 2 GSB|CIDP Foundation International MISSION AND Support VISION STATEMENT About Us Education The GBS|CIDP Foundation International is the preeminent global non-profit organization supporting individuals and their families affected by Guillain-Barré syndrome (GBS), chronic inflammatory demyelinating polyneuropathy (CIDP), and related syndromes such as multifocal motor neuropathy (MMN) through a Research commitment to support, education, research, and advocacy. Our Vision Advocacy Every person affected by GBS, CIDP, or related syndromes such as MMN, will have access to early and accurate diagnosis, appropriate and affordable treatment, and knowledgeable support services. Our Mission To improve the quality of life for individuals and families affected by GBS, CIDP, or related syndromes such as MMN by: • Creating and nurturing a global network of volunteers, healthcare professionals, researchers and industry partners to provide those affected with GBS, CIDP, or related syndromes such as MMN with support and the most current available information; • Designing and implementing public, medical, and professional education programs to increase awareness and improve understanding; • Funding research through grants, establishing fellowships, and using other appropriate avenues to identify the causes of and discover treatments for GBS, CIDP, and related syndromes such as MMN; • Structuring partnerships to engage in advocacy at the federal, state, and grassroots levels to advance our vision and mission with legislators and government agencies. Annual Report 2016.2017 3 Dear Friends, Thank you…Gracias…Merci…Grazie…Danke Sehr…Arigato…Do Jeh… Daw-Dyeh to our GBS|CIDP family from all over the world. Mere words cannot express how grateful we are for enabling us to live the mission of this organization. This year your support has empowered us to: • Present three one-day regional conferences • Host seventy-five US Chapter support group meetings • Re-design our website • Invite 15,000 friends to join a Walk & Roll event • Advocate on Capitol Hill for patient protections on healthcare reform • Grow our Center of Excellence program to 39 Centers around the world • Fund research in Zika- related GBS • Fund our grant program to over $3,000,000 in funding for research • Develop a 17 member Global Medical Advisory Board As we recognize with the world’s top Neuro-muscular specialists Although the past year has kept us busy, we remain committed to our our supporters, mission to why this organization started- to help the patient. be assured that The description of our logo really tells our story. It represents disorders your presence that for a period of time, paralyze an individual and devastate a family. The three (blue) squares represent the darkness, both physically and is your true gift socially that encompasses the patient’s world. The light (green) square represents hope and recovery and arrival back into light. We are that to us and we square! are grateful. On the pages that follow, we tell the story of the many activities and projects, which have defined our year that make the light of hope and recovery possible. Above all, you are the core of all we do. As we recognize our supporters, be assured that your presence is your true gift to us and we are grateful. Together we have much to share and many to serve. My best to all, Lisa Lisa Butler Executive Director 4 GSB|CIDP Foundation International FINANCIALS Endowment Summary GROWTH OF GBS/CIDP ENDOWMENT Since 1999, Doug Swope, CFP® has been assisting The Foundation in the prudent management of the endowment assets. Doug’s brother John was 2006 $250,000 diagnosed with GBS in 1998. During Doug’s 25 year career he has been with industry leaders Merrill Lynch & Smith Barney, and in 2009 he and his father 2007 $750,000 co-founded registered investment advisory firm, Stillwater Capital in Wayne, PA. The firm currently has 550 clients and manages over $700 million. 2008 $650,000 As the endowment has grown from $250,000 to over $7 million through generous contributions, bequests and portfolio performance, the Board’s 2009 $800,000 fiduciary focus has always been on managing risk within the portfolio while striving to fulfill the mission of support, education, advocacy and research. 2010 $2,800,000 In an effort to minimize costs, the endowment utilizes low cost exchange traded funds and individual, high quality bonds. The exchange traded funds 2011 $3,000,000 allow for the creation of a well-diversified portfolio and the individual bonds seek to provide stability and income required by the Board. 2012 $3,500,000 As fiduciaries, the Board seeks to limit spending to no more than 4% of the aggregate portfolio. The Investment Policy Statement provides guidance to 2013 $5,500,000 both current and future Board members, with preferred allocations of: 60% Domestic Equities, 10% International Equities and 30% Fixed Income. 2014 $6,000,000 The Domestic Equity allocations are spread across large, mid and small companies. The Fixed Income allocations focus on capital preservation, 2015 utilizing short term investments to protect from the adverse effects of rising $6,300,000 interest rates. The aggregate portfolio is managed to focus on Total Return, protecting principal while trying to achieve reasonable levels of growth. 2016 $7,200,000 GBS/CIDP GBS/CIDP GBS/CIDP REVENUE EXPENSE ENDOWMENT ■ Corporate 46.9% ■ Patient Education & Support 37.1% INVESTMENT POLICY ■ Symposium 23.7% ■ Research 26.2% PREFERRED ALLOCATIONS ■ ■ Contributions 17.2% Symposium 9.8% ■ Domestic Equities 60% ■ ■ Fundraisers 12.1% Programs 8.6% ■ Fixed Income 30% ■ Advocacy 7.9% ■ International Equities 10% ■ Management/General 5.8% ■ Fundraising 4.5% Annual Report 2016.2017 5 Support “Serving members and building a community” Creating and nurturing a global network of volunteers, healthcare professionals, researchers and industry partners to provide those affected with GBS, CIDP, or related syndromes such as MMN with support and “Our chapter the most current available information; And here is how we are doing it: meetings are a place and time to let it all go and 72 Chapter Meetings projected in 2017, be embraced” an increase of 18% from 2016 “A chapter meeting 140 volunteers nationally and 200 worldwide is“ a time we come together to learn from one another” 20,000 members were invited to Chapter Meetings in 2017 “Being a liaison is 1,500 new members nationally and 400 internationally the most selfless, received services since January 1, 2017 compassionate call to duty that I can perform” 44,000 members in U.S., 6,000 members internationally “Being a volunteer 4,000 new patient inquiries answered annually is being a light of hope” 100,000 newsletters mailed annually WE ARE AN INTERNATIONAL FOUNDATION AND HAVE MANY VOLUNTEERS THROUGHOUT THE WORLD ■ Volunteers 6 GSB|CIDP Foundation International Support U.S. VOLUNTEERS “ ■ Volunteers Centers of Excellence — 2017 AMSTERDAM, THE NETHERLANDS DETROIT, MI ORANGE, CA Academic Medical Center (AMC), Wayne State Univeristy Group/Detroit University of CA-Irvine University of Amsterdam Medical Center OSAKA, JAPAN, KINDAI SYDNEY, AUSTRALIA DUESSELDORF, GERMANY University Faculty of Medicine University of Sydney Heinrich-Heine University Department of PARIS, FRANCE BALTIMORE, MD Neurology Groupe Hospitalier Henri Mondor, The John Hopkins University School of HOUSTON, TX Universite’ Paris Est Medicine and The John Hopkins Hospital The University of Texas Health Science PHILADELPHIA, PA BARCELONA, SPAIN Center at Houston (UTHeath) Perleman School of Medicine at the Hospital De La Santa Creu I Sant Pau KANSAS CITY, KS University of Pennsylvania BELGRADE, SERBIA The University of Kansas Medical Center PHOENIX, AZ University of Belgrade Clinical Neurology LONDON, ENGLAND Barrow Neurological Institute Clinical Center of Serbia King’s College Hospital PHOENIX, AZ BIRMINGTON, UNITED KINGDOM LONDON, ENGLAND Phoenix Neurological Associatess University Hospitals of Birmingham MRC Center for Neuromuscular ROCHESTER, MN BUENO AIRES, ARGENTINA Disease, National Hospital for Mayo Clinic Neurology and Neurosurgery Argentina Hospital Britanico ROTTERDAM, THE NETHERLANDS BUFFALO, NY