Kimberly Nye, President
Kim lives in California with her husband, Zach, and their four kids: Tessa, Lily, Maggie and Colton. Both Tessa and Colton have SLC13A5 mutations. Kim holds a BA from Princeton. She was a graduate student at Oxford University when she gave birth to her first daughter, Tessa. For the last 10 years, Kim has been searching for the underlying cause of Tessa and Colton’s seizures and movement problems. This search has involved a tremendous team of dedicated doctors and researchers and their participation is key as we move beyond diagnosis and look to treatment options for people with SLC13A5 mutations. Kim and her family are eager to share their story and connect with other families facing citrate transporter disorders. Over the last decade Kim has been involved with the pediatric neurology and medical genetics community in the United States. She is currently on the Steering Committee for REN and she serves as a Lay Reviewer for CURE.
Kevin McDonnell, Treasurer
Kevin McDonnell is CEO and Chairman of Eclipse Data Technologies, an optical media equipment manufacturing company he founded in 1995. Eclipse provides products to the optical disc and entertainment industries. The majority of CD, DVD, and Blu-Ray discs produced in the world are done so with Eclipse products. Prior to that, Kevin founded the magnetic media replication company Trace Products where he served as Vice President of R&D and Director from 1984 until 1995. He holds a BS in Computer Science from the University of California Berkeley.
Since 1994 Kevin has been a volunteer pilot for the Alameda County Sheriff’s Air Squadron and has served as Commander of the Western States Association of Sheriff’s Air Squadrons since 2016.
Jordan Lodato-Hunt, MSW, LCSWA, Secretary
Jordan currently works for the Duke Clinical Research Institute in North Carolina. She holds a BA in Psychology from Stanford University and her MSW from UNC at Chapel Hill. Most of Jordan’s previous research experience has pertained to health and development, and especially the psychosocial impact of chronic illness.
Courtney Lodato Alberti, Director
Courtney is Director of Renewal Communications for Stanford Medicine, which includes the new Stanford Hospital, renovation of the original adult hospital and other Stanford Medicine real estate and land use initiatives. A graduate of University of California, Santa Barbara, Courtney worked as a journalist before beginning her career in PR and was named one of PR Week’s “Top 40 Under 40”.
Adam Alberti, Director
Adam is Managing Partner at Singer Associates, Inc. Adam is a graduate of the University of California, Berkeley, where he graduated with distinction and was awarded a BS in both Political Science and Environmental Sciences Policy Management. Adam is also a Veteran of the Persian Gulf War, where he served as a Navigator on board the historic “Mighty MO,” USS Missouri, BB-63 and the USS Long Beach, CGN-9.
Paula Gani, J.D., Director
Paula Gani has been an attorney to various Silicon Valley technology companies. She holds a B.A. in Human Biology from Stanford University and a J.D. from the University of Wisconsin. Paula has handled health policy matters for a local community organization on a pro bono basis, and she currently serves as a parent advisory board member to the Stanford Autism Center at Packard Children’s hospital.
Dennis McDonnell, Director
Dennis served as a Director and CFO of Eclipse Data Technology, Inc., a leading provider of DVD and Blu-Ray Replication from 2002 until 2009. Prior to that, he was the President, CEO and Chairman of the Board of Trace Products Inc., a publicly traded company that was the leading provider of magnetically recorded digital replication equipment from 1985 – 2005. From 1983 – 1985, he was Area Software Center Manager for Hewlett Packard. Dennis is excited to learn about the world of rare diseases and to help raise awareness about SLC13A5.
Judi Rees, Director
Judi has a long history of serving on nonprofit boards, including Make-A-Wish, Adalyn Jay Foundation and the Ronald McDonald House. She is inspired by her beautiful granddaughter Maggie, who has a rare genetic epilepsy, to help our pediatric epilepsy community.
Lee Scheuer, Director
Lee Scheuer is founder and Chairman of International ProInsurance Services, Menlo Park, CA for the past 43 year. Lee received an undergraduate degree from the University of Miami, and a graduate degree from American College. Before beginning his career with New York Life, Lee was a teacher of for two years working with special needs teens.
Lee has served on many group advisory boards of insurance companies such as Travelers Insurance Company, The Guardian Life Insurance Company, Anthem Blue Cross and Blue Shield of California. He has also served on the Boards of many local community organizations such as the Sequoia YMCA, International Committee and The American Youth Soccer Organization. Lee is the owner of the Bennett T. Scheuer Learning Center a Special Education facility in Camden, Maine and a supporter of the Literacy Program of Mid-Coast Maine.
Lee and his wife Kim have two children and 3 grandchildren which bring him a tremendous amount of Joy to his life
Lee enjoys spending time with his family, camping (preferable near streams, rivers or oceans), fishing, snow skiing, sailing, woodworking, traveling and spending time and assisting with special needs children/adults.
E. Robert Wassman, MD, Director
Dr. Wassman has pioneered the introduction of genetic testing and personalized medicine for over 35-years. His focus has been on the translation and delivery of cutting-edge diagnostic technology to clinical service in the areas of reproductive medicine, rare cell/non-invasive diagnostics, and Next Generation DNA sequencing spanning clinical disciplines of reproductive genetics, cancer and companion diagnostics, and neurodevelopmental disabilities including autism. His strategic insights, deep knowledge, and “quick study” abilities have enable him to achieve numerous “firsts” in many areas.
He has served as Chief Medical Officer for multiple companies in this space including Genzyme Genetics, Lineagen, Rosetta Genomics, Generation Health, Helicos Biosciences, Good Start Genetics, Celula, Ambry Genetics, Alfigen. He has co-founded several successful ventures, and served as a consultant to a wide variety of entities ranging from large and small clinical laboratories, IVD and Biotech companies, investor groups, regulatory agencies, payers and legal firms.
In addition to clinical and technical expertise he has laboratory and general operational, business development, medical affairs/marketing and sales experience. He had formal training and both public and private sector experience in reimbursement and managed care. He has had international experience in Europe, Japan and China.
He is a graduate of Yale University and Albany Medical College and Board Certified in Pediatrics and Medical Genetics.
Currently he serves as a senior executive adviser to a number of start-ups and other clients.