About Hope 4 Batten Foundation

Barb LaBarge is the founder of Hope 4 Batten Foundation, Inc and Alison’s mom. She has a BS in Medical Technology and is a certified Clinical Laboratory Scientist with a specialty in Immunohematology and a Master of Professional Studies in Health Services Management. She retired from Health care in 2016, and currently works as a CFO in her husband’s Manufacturer’s Representative business, Yankee Tronics, Inc.

She is a Board member and Treasurer for the Advocates for Upstate Medical University in Syracuse, NY and is Chair of the Grant committee for the organization. She graduated from Upstate Medical University from the College of Health Professions and New School for Social Research.

Barb is deeply committed to advocating for patients and their families affected by the adult form of Batten Disease, CLN4. Her goal is to bring awareness to genetic diseases and support medical professionals working towards discovering new therapies to bring about change for people with Batten Disease.

Nicholas Brown is Alison’s husband. He is Partner and Co-Founder of Charles Harbor Partners, bringing more than 20 years of experience in executive search, interim consulting, and workforce strategy. He is also part-owner of Talento Futbol Development, a private soccer training, strength, and development facility in Greater Boston. Nick earned a B.A. in Economics from the College of the Holy Cross.

Nick lives in Greater Boston with his wife, Alison, and their two children, Kaleigh and Will. Alison is living with CLN4 Batten disease, a rare and progressive neurological disorder for which there is currently no cure or approved treatment. As her husband and primary caregiver, Nick has seen firsthand the devastating impact of the disease on individuals and their families. That experience drives his commitment to raising awareness and funding the research and clinical trials needed to develop effective treatments, and ultimately a cure, for CLN4.

In 1987, Dr. McCabe joined the faculty at State University of New York Upstate Medical University as the Associate Director of Critical Care and Emergency Medicine. In 1991, an Academic Department of Emergency Medicine was formed, and Dr. McCabe became the founding Chair. He was instrumental in developing the Residency Program in Emergency Medicine at Upstate, which began in July 1992. He served as Chair of the Department of Emergency Medicine until 1996.

From 1996 to 2001, Dr. McCabe served as Vice President and Vice Dean for Clinical Affairs at the Upstate Medical University. Dr. McCabe was responsible for the oversight of the clinical system, including the University Hospital, ambulatory practice sites, as well as forming relationships with other hospitals and healthcare facilities in Central New York. Dr. McCabe was responsible for the coordination of academic activities within the clinical science departments of the College of Medicine.

He has practiced Emergency Medicine at University Hospital and the Veterans Administration Medical Center. He previously served as the Director of Hyperbaric Medicine at University Hospital, Syracuse, NY. He was also the founding Fellowship Director of the training program in Undersea and Hyperbaric Medicine at University Hospital.

In 2004, Dr. McCabe again assumed the position of Chair of the Department of Emergency Medicine at the Upstate Medical University. He served in this capacity until 2009 when he assumed the position of University Hospital Chief Executive Officer. In his CEO role, he oversaw the opening of the Golisano Children s Hospital, the construction of the Upstate Cancer Center, and the acquisition of Community General Hospital.

Dr. McCabe s research interests have been diverse and have covered numerous aspects of Emergency Medicine including the treatment of Hemorrhagic Shock, cardiac resuscitation, and the care of patients in the prehospital (EMS) environment.

From 1985 to 1993, Dr. McCabe served as Editor in Chief of the international medical journal Resuscitation. This journal is devoted to all aspects of cardiac arrest, cardiac resuscitation, and acute cardiac disease.

Throughout his career, Dr. McCabe has been active in medical associations. He served as President of the Ohio Chapter of the American College of Emergency Physicians, and served on the National Board of Directors of the College. Dr. McCabe held all offices in the American Colleges of Emergency Physicians, including President from 1993-1994. He served as a trustee of the American Board of Emergency Medicine from 1996-2006, and held all offices within the organization, including President of the Board from 2004-2005. He has represented the specialty of Emergency Medicine at the American Board of Medical Specialties. He was elected to the Board of Directors and Executive Committee of the American Board of Medical Specialties, and served as Chair of the Board 2011 – 2012.

Dr. McCabe has previously served as Vice Chair of the Board of Directors of the Academic Group, a member owned professional liability insurance company providing medical malpractice insurance solutions to academic faculty. He served as an honorary Board member from 2009 until 2017.

Currently, he serves as Vice Chair and Trustee for Cazenovia College, on the Board of Managers for Loretto, and as a Board Member Emeritus at the Syracuse Rescue Mission.

Marcia Philipp is a self-employed Interior Designer. She has been working in the design field for over 35 years, previously running an Interior Design firm with a partner for 17 years.

She served on the Syracuse Executive Association, a networking organization comprised of business executives whose circle of contacts is often able to open otherwise closed doors.

She was a Board of Director for 10 years for a Homeowners Association serving as the president for three years. She also created and ran the Communications Committee, wrote the monthly newsletter and chaired the architectural committee. She has served as the Chair for the Greater Manlius Chamber of Commerce’s yearly fundraiser attended by over 250 people and raised funds for the operations of the Chamber and for two local food pantries.

She is personally invested in finding a treatment and stopping CLN4 Batten Disease, driven by the hope that future generations will inherit a cure rather than face the same fight.

She is Alison’s Aunt and lives in East Syracuse, NY with her husband, cat and dog

Kevin has been providing professional business, accounting and administrative leadership since 1989. Kevin has held Chief Financial Officer and owner positions at several private and publicly traded Technology Industry related Companies and currently provides financial, accounting, merger & acquisition and trustee services to businesses, individuals and families through kmb Consulting Group.

Kevin has served as a Trustee and Officer at several not-for-profit organizations. He currently serves as Trustee Emeritus and Board committee member for Loretto Management Corporation, including chair of its Audit Committee and its subsidiary, Loretto Health and Rehabilitation Corporation. In addition, he serves board and Risk Management Committee of the First Tee Chapter of Syracuse New York and Finance Committee of Sterling Oaks Community in Naples, Florida.

Kevin received a BS in Accounting from SUNY Oswego, is an avid golfer and member at Onondaga Golf & Country Club (Syracuse NY) and Imperial Golf Club (Florida). He and his spouse Jackie share time between Syracuse, NY and Naples Florida.

Steve Fleming’s experience comes from over 20 years in the global life sciences industry providing companies with commercial strategy support and helping launch innovative, life-changing therapies. Steve currently works for Trinity Life Sciences where he’s held various roles ranging from head of strategic advisory teams to Chief Operations Officer. Steve holds an undergraduate degree from Princeton University and an MBA from the Carroll School of Management at Boston College.

Since graduating from College of the Holy Cross in 2004, Dan has worked as a financial advisor for Ameriprise Financial. He is currently a partner and Private Wealth Advisor for Optio Wealth Management Group at Ameriprise in Boston. He resides in Medford, MA with his wife and two children and enjoys tennis, cooking and collecting wine.

Charlie Post is a Managing Director in J.P. Morgan’s Mergers & Acquisitions group in New York, where he advises companies, boards and investors across the media, communications, technology, sports and entertainment sectors. He has more than 20 years of experience in finance and strategic advisory. Prior to J.P. Morgan, Charlie worked at GE Capital and began his career in GE’s Financial Management Program. He received an MBA with distinction from NYU Stern School of Business, where he was a Stern Scholar, and a B.A. from the College of the Holy Cross. He also serves on the endowment committee of Worcester Academy.