Meet our Board of Directors

Augie Nieto is the co-founder of Life Fitness, a global leader in the fitness industry. He was one of the original pioneers in the fitness industry and was president of Life Fitness for nearly 25 years until they were acquired by Brunswick Corporation in 1997.

Currently, Augie serves as an operating advisor to North Castle Partners, a private equity firm and is on the board of Curves, Jenny Craig, and Hydromassage. Augie formerly served on the board of Quest Software, where he was one of four members of its 'Special Committee' that negotiated the sale of Quest Software to Dell Computers in 2012. He also served on the board of Dynavox Systems, a developer of speech generating systems, and was Chairman of the Board of Octane Fitness.

Augie is Chairman of the Board of the ALS Therapy Development Institute in Cambridge, MA, the world’s largest ALS dedicated drug development organization. He is the Chief Inspirational Officer for Augie's Quest, an aggressive, cure-driven, international fundraising effort, having raised over $45 million to date to fund research at the ALS Therapy Development Institute.

Augie lives in Corona del Mar, California with his wife Lynne and dog Rubye. They have four adult, married children and seven grand babies.

Dr. Steven Perrin joined the ALS Therapy Development in 2007 as part of historical collaboration between the Institute, the Muscular Dystrophy Association and Augie's Quest with the goal of developing a center of excellence for ALS drug development and translational research for neurodegenerative diseases. Steven is currently the Chief Executive Officer and Chief Scientific Officer. He earned his Ph.D. at Boston University Medical Center in the Department of Biochemistry. Steven moved into the pharmaceutical industry in 1997 holding positions at the Hoechst-Ariad, Genomics Center, Aventis Pharmaceuticals and more recently as Director of Molecular Profiling at Biogen Idec. Since joining the Institute, Steven has spearheaded the architectural design and execution of the world's largest Precision Medicine Program. This innovative program has bridged the gap between early preclinical target discovery and the advancement of biomarkers and quantitative outcome measures for clinical development in ALS and other neurological disease indications. Under his leadership ALS TDI has assembled a world class scientific team that in the last seven years has brought two potential treatments into clinical development for ALS. He has accomplished these objectives by creating innovative business models bridging philanthropic investments in early stages of drug development with for virtual for profit biotechnology companies to manage clinical translation. Steven is a frequent invited participant and speaker in international conferences on computational biology, genomics, drug development, and neurodegeneration.

Dr. Appel is The Peggy and Gary Edwards Distinguished Endowed Chair for the Treatment and Research of ALS, Department of Neurology, Neurological Institute, The Methodist Hospital as well as a Professor of Neurology at Weill Medical College of Cornell University and a Professor of Biochemistry and Molecular Physiology at Baylor College of Medicine. He was previously Chair of the Department of Neurology at Baylor College of Medicine as well as Chief of Neurology and the James B. Duke Professor of Medicine at Duke University Medical Center. Dr. Appel is a native of Massachusetts and received his Bachelor Degree at Harvard University and his Medical Degree from Columbia College of Physicians and Surgeons. He is the Director of the MDA/ALS Research and Clinical Center at the Methodist Neurological Institute, and past Director of the National Institute of Aging Alzheimer's Disease Research Center. He has received a number of awards for his accomplishments in Neurology and Biochemistry, including the Gold Medal Award in 1997 from Columbia College of Physicians and Surgeons; the Sheila Essey Award in 2003 from the American Academy of Neurology, has been elected a Fellow of the American Association for the Advancement of Science in 2003, was awarded the Baylor College of Medicine Alumni Association's "Distinguished Faculty Award" in 2004, the MDA's Wings Over Wall Street Diamond Award in 2004, the Texas Neurological Society Lifetime Achievement Award in 2005 and the Forbes Norris Award for "compassion and love for humanity in research and treatment in patients with ALS" from the International Alliance of ALS/MND Associations in 2005.

Kent's interest in ALS dates from the time of his brother-in-law, Augie Nieto's diagnosis. Kent received his Bachelor's degree in biochemistry from the University of California, Berkeley and his medical degree from Columbia University's College of Physicians and Surgeons. He completed his specialty training in internal medicine, hematology, and medical oncology at Cedars-Sinai Medical Center and USC's Norris Cancer Center in Los Angeles. Kent practiced clinical subspecialty medicine for nearly 30 years, and continues seeing patients pro-bono at the local free clinic. He served for over a decade on the board of directors of Physicians for Social Responsibility. In addition to his work on PSR's executive committee, he was national president in 2006. He currently lives on the Monterey Peninsula on California's central coast.

The Chairman and CEO of the Cappello Group, Inc., a boutique merchant banking company. He has over twenty years experience in all aspects of corporate finance, investment banking, merchant banking and venture capital both in the U.S. and overseas. He has acquired control of and been the financial advisor to numerous public and private companies in transactions ranging from $10 million to $20 billion. Mr. Cappello is currently, or was previously, a member of the numerous boards of directors ranging from large corporations to academic and research institutes. The following is only a partial list of Mr. Cappello's board membership; YPO International, USC Board of Trustees, RAND Corporation, Inter-Tel (NASDAQ), Geothermal Resources International (AMEX; Chairman), CytRx Corporation (NASDAQ), Advanced Biotherapy, Inc. (OTC; Chairman), Australian Cancer Technology Limited (ASX – Sydney Australia), Catholic Big Brothers of Los Angeles (Chairman, 2002), Getty Institute and The Joffrey Foundation. Cappello received a Bachelor of Science degree, with honors, from the Marshall School of Business at the University of Southern California in 1977, including recognition as an "Order of the Palm" scholar. He was later awarded an Honorary Doctorate of Humanities from Goodwin College in Stanford, Connecticut. Mr. Cappello has been a guest lecturer at the USC, UCLA and Harvard Business Schools as well as numerous YPO, WPO, YEO and CEO International Universities. He has been quoted in the Wall Street Journal, BusinessWeek, FORBES, Dow Jones, the Los Angeles Times and the New York Times. He is also a contributing author to the recently published book, The New Investor Relations (Bloomberg PRESS). A California-native, Mr. Cappello has lived in Bakersfield, Los Angeles, New York, London and Geneva, Switzerland.

Jennifer Gore Dwyer is the owner of St. George Marine. The family-run company was established in 1986 by Jenny and her husband Pat. After her beloved husband passed away from ALS in June 2013, Jenny became sole owner and president of St. George Marine, working with her children Sean and Brenna to continue to run and grow the family business. The company owns two vessels. The F/V Jennifer A fishes crab in Alaska's Bering Sea, and in summer works with its sister ship, the F/V Brenna A, purchasing salmon on behalf of seafood processors in various parts of Alaska.

Jenny and Pat built their company from the ground up, working together on Alaska's fishing grounds and becoming involved in fisheries politics. Together, they lobbied state and federal officials on issues related to the Alaska seafood industry. In 2005, when Pat was diagnosed with ALS, the partnership built to lobby government on fish issues became a partnership working to live with ALS.

Through that partnership, Jenny became a committed advocate for the ALS cause. She started out with her local ALS chapter, raising over $100,000 to benefit PALS in the Pacific Northwest area. Jenny's involvement expanded to the national level. She and her family worked extensively behind the scenes in Washington, D.C. to ensure passage of the ALS Registry, which was signed into law by President George W. Bush in 2008. At the same time, recognizing the need for innovative research funding and federal funding, Jenny became a vocal supporter of ALS TDI. She established the first National YFALS Corntoss Tournament in Seattle. Jenny solicited sponsors, donors and participants from the family's significant network in the region. In 2013 the Seattle Corntoss event raised $55,000 for ALS drug development programs at ALS TDI.

On a national level, Jenny has made several trips to Capitol Hill in Washington, D.C. on behalf of ALS TDI. Jenny and ALS TDI met with ranking members of both the U.S. House and Senate to bring attention to the need for increased federal support for ALS translational drug research. Jenny reached out on the national level for all families living with ALS, including those of the military, who are diagnosed with ALS at a rate twice that of other individuals. In February of 2013, Jenny's advocacy went to the White House. She wrote directly to President Obama outlining the dismal statistics and the lack of research funding for this insidious disease. Her letter was so compelling that it made its way to President Obama's desk, and the President sent a hand written note to her and Pat. The president said he would look for ways to support "ALS specifically." Jenny is determined to continue reaching out to Washington, D.C. and the White House on behalf of ALS TDI, to ensure there is recognition and continued translational research funding for ALS, before more families are confronted with the life decisions that face all people with ALS.

Steve was diagnosed with ALS in 1997. An accomplished musician and composer, he was, at the time of his diagnosis, orchestrating and playing music for major motion pictures including The Lion King, A League of Their Own, Face Off, The Mask, and many others. He has served as musical director for the Grammy winning Brian Setzer Orchestra, published two ballets, many jazz tunes, a book of flute music, and his original poetry. Within months of his diagnosis with ALS, Steve became unable to play the flute and saxophone, but has started his third solo CD in collaboration with his younger brother, Ed. Without the ability for musical expression, Steve has redirected his creative energies toward studying and theorizing around the etiology of ALS. Steve has been a key activist and powerful advocate for patients becoming involved in the research and development of concrete therapies to treat ALS.

Faced with his 29 year old brother Stephen's diagnosis of ALS in 1998, Jamie founded ALS TDI, the world's first nonprofit biotechnology company, and applied his engineering and management skills to dramatically accelerate ALS research. ALS TDI broke new ground on many fronts and has become widely recognized as one of the most promising and innovative research organizations. Under Jamie's leadership, ALS TDI implemented an industrialized therapeutic validation process and built one of the world's leading ALS drug discovery programs. ALS TDI was the first organization to run an open research program, posting in real time the results of its studies for patients, doctors, and the research community. It also pioneered a new model for engaging patients and families in fundraising and actively involving them in ALS research. Over 100 families have joined with Jamie, Stephen and the Heywood's to fund these innovative efforts. ALS TDI has raised tens of millions of dollars through its philanthropic, corporate, and government programs, culminating in the historic discovery partnership in 2007 with Augie's Quest and the Muscular Dystrophy Association. Jamie is the Chairman and co-founder of PatientsLikeMe the worlds leading patient information website with in depth information on treatments, symptoms, and real world information on managing life changing diseases. An MIT Engineer, he is an active investor and advisor to startups, companies and non profits working improve the way in which biomedical research is conducted. Jamie's work has been profiled in the New Yorker, 60 Minutes, Pulitzer Prize winner Jonathan Wiener's book, His Brothers Keeper, and in the Sundance award winning documentary So Much So Fast.

John is the Sun Jae Professor of Mechanical Engineering and Director of the Sloan Automotive Lab at MIT. He has made major contributions to the fields of transportation, energy and air pollution, and consults to both industry and the government on technical and policy issues. His book, Internal Engine Fundamentals, is regarded as the definitive work in the field. He was elected to the National Academy of Engineering in 1998, and the American Academy of Arts and Sciences. Professor Heywood has an honorary Doctor of Technology degree from Chalmers University of Technology in Sweden, and an honorary Doctor of Science degree from City University in London.

Spiros Jamas was the President and CEO and co-founder of Tempero Pharmaceuticals, a GSK-funded company focusing on T-cell mediated diseases. Prior to joining Tempero, Dr. Jamas was the Global Healthcare Analyst for State Street Global Advisors (SSGA), a global institutional asset management firm. Dr. Jamas has over 20 years senior management experience in the biopharmaceutical industry serving as CEO and/or founder of several biotech companies (Tempero, Enanta Pharmaceuticals, Alpha-Beta Technology, Inc.). In these capacities he was responsible for raising over $280M in funding through venture capital, public and debt offerings and led R&D programs from discovery research to advanced clinical development. Dr. Jamas obtained a Doctor of Science in Biotechnology from M.I.T. in 1987, a M.Sc. also from M.I.T. in 1983 and a B.Sc. in Chemical Engineering from UMIST, England.

Andrew Niblock is the Director of Schoolwide Initiatives and the former Head of Lower School at the Greenwich Country Day School, Greenwich, CT. Prior to his current position he was the Director of Lower School at Hamden Hall Country Day School and spent eleven years as a teacher, coach and administrator at Isidore Newman School in New Orleans.

In July 2016 Andrew was diagnosed with ALS. In the time since, Andrew and his family have become more hopeful, not less. Andrew's life's work is education, and this is the lens through which he views ALS.

There has never been a more exciting time in ALS science. The creativity that comes with looking at problems from different angles, collaboratively, and with unprecedented advances in technology, gives justified cause for hope.The avalanche of ideas in the scientific world of this fight calls for commensurate creativity in the world of support.

After graduating from University of Colorado with a BA in Accounting, Lynne joined her family real estate development and management firm in 1980. Her original involvement was with the single family home building division of the business, building upwards of 200 homes per year. She later became president of 'Classic Management' – the company's property management division, and grew its portfolio of apartments from 800 to 1,200 units, while also overseeing the commercial and office building portfolio. She retired from the firm in 2000.

Lynne continues to be involved in real estate investing and served on the board of CT Realty, a California real estate investment company. She served as Co-Chair of the ALS Division of the Muscular Dystrophy Association from 2006 until "Augie's Quest" left the ranks of MDA and became part of ALS Therapy Development Institute in 2014.

Lynne co founded Augie's Quest with her husband Augie and has played a pivotal role in its success through her vision, leadership and focus on the bottom line where her accounting background has been key. Among other things, Lynne created the concept for the BASH fundraiser, Augie's Quests most successful single day event, and she represents Augie as the "voice of Augie's Quest", at all major events and with the media.

Lynne lives in Corona del Mar, California with her husband, Augie, and dog, Rubye. They have four adult, married children and five grand babies.

ALS TDI's first contact with Ted and his wife, Wendy, was at a San Francisco ALS 101 in October of 2007. The Reich's attended the seminar because their 22 year old son, Corey, who was enrolled at Middlebury College, had recently been diagnosed with ALS. Ted has been a CPA for the past 25+ years in the Bay Area. He formerly worked for Arthur Anderson, and has held his own firm for the past twenty years. Ted is very well connected in many California industries such as logging, farming, grocery chains, and dozens of other industries that his firm supports. In the last three months of 2007 ALS TDI received $43K via the Reich network. In April of 2008 Wendy and Corey visited the lab in Cambridge. In August 2008, with Mike Shannon's coaching, the Reich family generated almost $400K through their first fundraising event (Corey's Crusade). In November of 2008 Corey and Wendy attend the 2008 ALS TDI Leadership Summit. Ted, Wendy, and Jacque Portewig (Wendy's Sister) are ALS TDI Ambassadors. In January of 2009 Ted joined the new ALS TDI Advisory Council. Corey himself is now interested in taking a more active role as a patient-advocate and may be willing to do some public speaking to benefit ALS TDI's outreach. In fact, Corey has joined together with several other young people living with ALS to create the ''Young Faces of ALS'' campaign in 2010 and attended several MLB games to raise awareness of ALS and dollars for research. This year, the Young Faces of ALS campaign launched its first national fundraising initiative, a National Cornhole Challenge Day, which took place on June 18, 2011 and raised $150,000. In addition to fundraising, Ted has provided support via pro bono legal services through one of his many contacts, Darin DeAngeli with Ahrens & DeAngeli in Seattle and Boise. In total, the Reich network has generated just over $1.6 million for research at ALS TDI!

Rob is the Chairman and CEO of RDN Group; strategic advisors focused on corporate transitions, customer interface, sales and marketing, distribution and supply chain management. (Customers include: GM, GE, US Navy, Avnet, Siemens, Simon and Schuster). Additionally, he serves as Vice Chairman, Executive Director and Chairman of the Investment Committee of CommerceNet which researches and funds open platform, interoperable business services to advance commerce. Mr. Rodin served for over 10 years as CEO and President of Marshall Industries (NYSE: MI) a global, industrial, electronics distributor and supply chain management company with over $2 billion in sales. Information Week Magazine highlighted Marshall Industries as the "World's Number One Company in the Use of Technology", and CIO Magazine recognized Mr. Rodin as one of the "Top 100 Leaders for the New Millennium". UCLA presented Mr. Rodin with the "Information Systems Award for System Leadership" and the University of Connecticut presented him with the "Distinguished Alumni Award" and elected him to the "University Hall of Fame". Mr. Rodin's best selling book, "Free, Perfect and Now: Connecting to the Three Insatiable Customer Demands", chronicles the radical transformation of Marshall Industries. The changes he led have been taught as case studies at Harvard Business School, Columbia University, USC, MIT, and Stanford University. Mr. Rodin's Board activities include: the Board of Directors of Napster (NAPS)(formally Roxio) as Chairman of the Compensation Committee and a Member of the Audit Committee, Vice Chairman of the Board of Directors of CommerceNet, Board Member / Director of supplyFX, Board Member /Director and Member of the Governance and Nominating Committee of SM&A (NASDQ: WINS), Director of Inter-tel (NASDAQ: INTL), Advisory Board of LASEC (Los Angeles Sports and Entertainment Commission) Advisory Board of Electronics Supply & Manufacturing Magazine (CMP Publications), on the planning committee for Harvard and Stanford Presidents Seminars (YPO) and on University of Connecticut's School of Business Board of Advisors (Executive Council and Strategic Development Committee) as well as several private company advisory boards. Mr. Rodin formerly served on the Advisory Board of Distribution at USC, the Board of Directors of RosettaNet, as a Trustee of the W. Edwards Deming Institute, and President of NEDA's (National Electronic Distribution Association) Education Foundation. Rob is the Chair of the Executive Compensation Committee of the Board of Directors at ALS TDI.

Paul Sallaberry is a software industry veteran with a career encompassing the build and operational management of Enterprise-class worldwide sales, marketing, technology and consultative services organizations.

As Executive Vice President of Worldwide Field Operations for VERITAS Software, Paul was responsible for defining strategy, managing operational activity driving revenue in excess of $1.65 billion, and achieving profit goals for the corporation's global multi-tier sales distribution and professional services operations. Paul propelled the organization's transition from that of an emerging start-up to its unprecedented position as the world's leading provider of enterprise storage management solutions, and industry-recognized sales distribution powerhouse. Paul concluded his tenure with VERITAS in December of 2003 in the capacity of Executive Vice President of Sales Strategy, having successfully positioned the organization's International growth territories for the next phase of sales expansion.

Paul joined VERITAS in the role of Senior Vice President of Worldwide Field Operations, in April 1997, from OpenVision Technologies, Inc., a leading provider of client/server systems software for automated operations, application availability, backup, and network security. In this capacity, Paul successfully led the integration of OpenVision's customer-facing functions with those of VERITAS, and laid the field operations foundation which subsequently enabled VERITAS' future worldwide distribution expansion. In 1999, Paul led the seamless worldwide integration of VERITAS' acquisition of Seagate, growing VERITAS' worldwide quota-carry sales capacity from an employee base of 200 at acquisition, to its ultimate capacity of 2600+. Through this evolution, Paul successfully charted the course for VERITAS' high-growth in sales productivity through a channel expansion strategy leveraging direct account management, channel partnerships, e-business readiness, mergers and acquisitions, and value-add services including consulting and end-user education.

While at OpenVision, Paul served in the capacity of Senior Vice President of Sales, where he led the organization's product and professional services revenue growth through IPO, and its subsequent acquisition. Prior to OpenVision, Paul held a series of positions at Oracle Corporation from 1989 through 1992, including Vice President of Oracle's Vertical Sales Division, a capacity in which Paul defined Oracle's vertical sales strategy, and evolved the organization from an emerging market opportunity to that of a major component of Oracle's mainstream revenue.

He serves on the Board of Directors for Acquia, Calypso Technologies, Moovweb, Quorum Labs, Dataguise, Livemagic, and is Chairman of the Board of Seal Software. He also advises several young Silicon Valley companies. He is a member of the U.C. Davis Foundation Board of Trustees; serves on the Deans Advisory Council for the Graduate School of Management., and Is a member of the Sacred Heart Schools Board of Trustees Additionally, he is a frequent speaker at the Stanford Graduate School of Business and the UCLA Anderson School of Management. Paul holds a Bachelor of Science degree from the University of California, Davis.

Robert Sepucha is Senior Vice President, Policy and Business Development for Fresenius Medical Care North America, the nation's largest integrated provider of clinical services and products for persons undergoing treatment for kidney failure, including chronic renal dialysis. Prior to joining Fresenius, Robert served as general counsel for the Massachusetts Life Science Center, as well as chief of staff and senior policy advisor to Congressman Harold Ford, Jr. (D-TN), where he was the Congressman's primary advisor on legislative strategy, political activities, media strategy and legal issues. Robert also practiced law for nearly a decade at Sonnenschein Nath & Rosenthal and Gunderson Dettmer, where he represented venture capitalists and emerging growth technology companies across the country. Robert received a J.D. from the University of Michigan and a B.S. in government and economics from Dartmouth College.

Michael M. Smith is president of B.T. Loftus Ranches, Inc., a family-owned farming and orchard operation in Washington's Yakima Valley. He is also founder, director and former president of Yakima Chief, Inc., an international hops sales organization. Smith and his wife, Cheryl Hanses Smith, have been supporters of ALS-focused organizations for many years, funding both patient services and research efforts. The Hanses family has the inherited form of ALS, and there are three family members currently battling the disease. Recently, they worked with ALS TDI to develop the "Ales for ALS" program, a unique craft brewery-based fundraising initiative created to fund drug development at ALS TDI.

Julie Swan spent almost her entire 34-year professional career in the foodservice industry, retiring from Sysco Corporation, as a corporate vice president of finance in June 2012. She worked in various financial roles, both in the operating divisions as well as at the corporate office in Houston, Texas. Asked to help establish Sysco's Strategic Management department in 2012, she relocated from Miami to Houston. While there she worked extensively with Sysco's non-traditional foodservice divisions, including produce and meat companies as well as its international acquisitions.

As she approached retirement, her son Kevin was diagnosed with ALS in February of 2012. Within six weeks of diagnosis, Kevin created A Life Story Foundation to raise awareness and create action to find treatments and ultimately, a cure for ALS. Julie assumed the role of Chief Financial Officer at A Life Story Foundation, a position she still holds currently. Since it's inception, A Life Story Foundation has raised over $500,000 and has partnered with ALS TDI as its research partner.

Julie has been involved with not for profit organizations throughout her career. She has served on the corporate boards of the United Way, YMCA, Boys and Girls Clubs of Manatee County and Broward County, as well as being Treasurer of the Women's Foodservice Forum.

Julie has a BS degree from Georgetown University and MBA from Nova University. She is married and has two sons and lives in Bradenton, Florida.