OUR MISSION & EXECUTIVE BOARD
OUR MISSION
Hunter's CMT4B3 Research Foundation, a non-profit 501(c)3 public charity, was founded to advance research and develop therapeutic treatments for Charcot-Marie-Tooth Disease Type 4B3 (CMT4B3) and other inherited neuromuscular disorders. Our mission is to increase public awareness of CMT, drive gene therapy development, support drug discovery and repurposing efforts, and establish a patient registry—all with the goal of improving the lives of those affected by CMT4B3.
In May 2020, three-year-old Hunter Schultz was diagnosed with CMT4B3, an ultra-rare genetic disorder for which there is no cure or treatment. A single coding error in Hunter’s SBF1 gene disrupts an essential protein, leading to the breakdown of his nerves. As a result, Hunter’s ability to move will decline as his brain and spinal cord lose communication with his muscles, leading to progressive paralysis.
Faced with this devastating reality, Hunter's parents, Iris and Brett, knew they had to take matters into their own hands. They found hope in the breakthroughs of genetic therapies for other rare diseases and decided to forge their own path to a cure for Hunter. Today, Hunter is one of only 15 known patients worldwide. With research funding for ultra-rare diseases being nearly non-existent, Iris and Brett are determined to change that. If the world wasn’t built to save Hunter, they are committed to changing the world.
EXECUTIVE BOARD
-
Lianne Chan Cappo
Lianne Chan is a graduate of University of Michigan. Lianne began her career in investment banking at Citigroup in New York City before moving into private equity at Oaktree Capital and subsequently Clearlake Capital as a member of their investment committees. In 2019, Lianne joined Deque Systems as a Product Success Manager. Deque provides web and mobile accessibility solutions, with the mission of digital equality. Lianne's in-depth knowledge of project management and technology management brings a diverse perspective and strategic thinking skill-set to the CMT4B3 Research Foundation.
-
Harry Feinberg
Harry Feinberg began his education at Boston College and later earned a degree in Business Administration from Long Island University. He started his professional career as an associate real estate broker with Gronich and Company in Manhattan, where he specialized in commercial retail leasing. During this time, Harry brokered several high-profile retail deals, most notably securing the iconic FAO Schwarz toy store’s location in the General Motors Building on 5th Avenue. He later transitioned to Douglas Elliman, focusing on commercial lease negotiations, and now holds his brokerage license independently. Harry went on to establish Outsourcing Today, a successful media company that published three international B2B magazines and hosted three major trade shows centered around outsourcing in Human Resources and Finance. After selling the company in 2005, he invested in a Human Resources Information System (HRIS) software firm, which he also eventually sold. Today, Harry is the President and Principal of one of the largest fully entitled mixed-use real estate development projects in New York State, overseeing 437 acres with 1.5 miles of Hudson River frontage. His expertise encompasses real estate development entitlements, strategic planning, financial management, team building, and market analysis, among other areas. In addition to his business ventures, Harry is dedicated to philanthropy through The Harry Feinberg Family Foundation, which supports numerous charitable causes, including research for CMT4B3.
-
Brett Schultz
Brett Schultz is the Head of the Natural Gas Derivatives Desk at Marex Spectron, a UK based broker of financial instruments in the commodities sector and energy markets. Brett is actively engaged in the leadership of the Natural Gas Options Desk, as well as firm-wide business development and other internal initiatives for the energy sector. Brett has been employed by Marex since September of 2011. Prior to Marex, Brett worked at MF Global as a commodities broker. Brett is a co-founder of Hunters CMT4B3 Research Foundation and sits as the chair of the fundraising committee. Brett grew up in Scarsdale, New York and currently resides in New York City with his wife Iris and their son Hunter, who is affected by CMT4B3.
-
Iris Schultz
Iris Schultz received her MBA from Fordham University in Finance. After college, Iris followed her passion in the field of graphic arts and received a degree from Hunter College. Iris and her husband Brett are co-founders of Hunters CMT4B3 Research Foundation. She volunteers full-time for the Foundation and sits as the Chairman of the Board and President of the nonprofit organization. Her son Hunter was diagnosed with CMT4B3 on May 19, 2020. She was told there was no cure or treatments. Instead of watching her son waste away, she decided to follow the science and raise funds to find treatments for children and adults suffering from CMT4B3 and related neuromuscular diseases.
-
Robin Gross Schultz
Robin Gross Schultz is a graduate of Hofstra Law School. After graduation, Robin served as a law clerk for Judge Alfred Kleiman, Supreme Court Bronx and then clerked for Judge Shirley Fingerhood in the Civil Court of Manhattan. Robin was also employed by William Paul & Associates, Ltd, an international film and graphics art supplier for 20 years as Corporate Counsel. Robin sat on the Board of the Windward School in White Plains for eight years, and as President of the Board for a two year term. The Windward School is a premier independent day school for children with dyslexia or other language-based learning disabilities. She was instrumental in pioneering their fundraising efforts and working with the Board to expand this small school with 126 children into a nationally recognized institution with a teachers training institute serving the needs of over 950 students. Robin lives in Scarsdale, New York and is a full time volunteer for Hunters CMT4B3 Research Foundation. She is the “granny” of Hunter and determined to fight for a cure for CMT4B3 and related neuromuscular and peripheral nerve diseases.
-
Amy Cayne Schwartz, J.D.
Amy Cayne Schwartz, J.D., is the President and General Counsel of Genome Projectwrite (GP-write) and Co-Founder of Base Pair-Go. Since 2016. Amy is focused on launching the first virtual foundry and incubator for genome-scale writing and redesign. Concurrent with this effort is the development of a first-of-its kind CAD platform to enable whole-scale genome design and a newly minted Industrial Advisory Board including world leaders in synthetic biology. Amy is also the General Counsel and Business Development Lead for an early-stage biotech company, as well a Venture Partner with Cymba X, an investment fund focused on advancing DNA/RNA science and technology. As a Co-Founder of Base Pair-Go (“BPG”), Amy is launching an engineering biology certification platform to democratize access to this interdisciplinary science which is poised for exponential growth. Prior to joining GP-write, Amy was an Associate at the law firm Cadwalader, Wickersham & Taft LLP on the Real Estate Finance and Securitization teams, and also practiced at the law firm Nixon Peabody LLP in the areas of Complex Litigation and Real Estate Finance. Amy holds a B.A. in Political Science from the University of Pennsylvania, and studied at The London School of Economics (LSE). She holds a J.D. from Fordham University School of Law, where she was a member of the Intellectual Property, Media and Entertainment Law Journal. Most recently, Amy attained Certification from Massachusetts Institute of Technology (M.I.T.) in Biomanufacturing.
-
Lindsay Zaken
Lindsay Zaken graduated with a BA in Psychology from the University of Pennsylvania. She currently lives in Greenwich, Connecticut with her husband and three children. Lindsay began her career in the development office at Rockefeller University, then went on to work in marketing for Feld Entertainment. For the past fifteen years, while raising her three children and managing the home, she has volunteered her time for many non-profit organizations. Lindsay is a board member and Vice President of the Scarsdale Schools Education Foundation, an organization that supports the district by funding innovative programs and facilities that enhance the academic and personal growth of Scarsdale students. She has organized community-wide bake sales for Cookies for Kids Cancer, an organization committed to raising funds for research in pediatric cancer. Lindsay also spearheads and manages her family’s philanthropic endeavors. She is a member of the Advisory Board at Mount Sinai Hospital, a donor and volunteer at White Plains Hospital and a sponsor of two student scholarships at the University of Pennsylvania. Lindsay is passionate about helping children in need and is looking forward to being a Board Member of Hunters CMT4B3 Research Foundation.