We are STRONGER together

Leadership Team

Kimberly Nye, Executive Director

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. Kim and her family are eager to share their story and connect with other families facing citrate transporter disorders. Kim has been involved with the pediatric neurology and medical genetics community in the United States for more than a decade. She is currently on the Steering Committee for REN and she serves as a Lay Reviewer for CURE.  If you have any questions, send Kim an email.

Deepti Dubey, PhD, Scientific Officer

Dr. Dubey is scientific officer for TESS Research Foundation. She received her PhD from Indian Institute of Technology, Kanpur, India. She later did her postdoctoral training in the department of Neurology at Stanford University. Her research career is focused on understanding underlying molecular mechanisms of epileptic disorders including Lafora Disease, a rare genetic form of progressive myoclonus epilepsy and temporal lobe epilepsy induced by brain insults using cell and animal models. Dr. Dubey is interested in applying her research experience to facilitate understanding of rare genetic disorders like SLC13A5 deficiency along with exploring immediately available treatment options.  You can email Deepti here.

Cat McDonnell, MA, Director of Communications

Catherine is the Director of Communications for TESS Research Foundation.  She has a work background in Communications, Sales, Business and Marketing and a Master’s Degree in Communication Management from University of Southern California.  She is the aunt of two children with SLC13A5 Deficiency and knows how devastating this disease is for families.  Catherine is determined to help raise awareness, connect families and find a cure.

Tammy Wester, Community Outreach

Tammy heads our community outreach and volunteer program.  She has been with TESS Research Foundation since it started, and she is the queen of organization.  In addition to raising awareness at community events, she spearheads our snail mail communications.

Emily Hsu, Webmaster

Emily is our webmaster. We look forward to your feedback as our website continues to evolve. Please email Emily with any web related questions or comments.

Board of Directors

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.

Zachary Nye, PhD, Treasurer

Zach is a financial economist and senior consultant at Stanford Consulting Group. He holds degrees from Princeton University, London Business School and University of California, Irvine. Zach is the parent of 2 children with SLC13A5 mutations.

Jordan Lodato, Secretary

Jordan currently works for the Duke Clinical Research Institute in North Carolina. She holds a BA in Psychology from Stanford University. 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 manages public relations for the $5 billion Stanford University Medical Center Renewal Project, which includes constructing the new Stanford Hospital, expanding Lucile Packard Children’s Hospital Stanford and replacing School of Medicine facilities. 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 an Executive Vice President 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 is a Vice President and Assistant General Counsel at Globalfoundries, where she oversees the U.S. legal team. 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.

Kevin McDonnell, Director

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.

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.

​​​Scientific Advisory Board

Brenda Porter, MD, PhD

Dr. Porter is currently an Associate Professor of Neurology at Stanford University. She received her M.D. and Ph.D. from Washington University in St. Louis, and completed a residency in pediatrics at St. Louis Children’s Hospital; pediatric neurology and pediatric epilepsy at Children’s Hospital of Philadelphia. Dr. Porter is the treating physician for Tessa and Colton Nye. Now that a cause for Tessa and Colton’s seizures and other neurologic problems has finally been identified, Dr. Porter is focused on determining how to best treat them and other children with SLC13A5 mutations. It is her hope that through this website greater awareness will be raised for the disorder and increased communication amongst other affected families and the health care professionals providing treatment to their children. Dr. Porter is very interested in speaking with other doctors taking care of children with SLC13A5 mutations. She can be reached directly via email.

Matthew Bainbridge, PhD

Dr. Bainbridge is the President and CEO of Codified Genomics. Matthew has worked with high-throughput sequencing since its inception. At Canada’s Michael Smith Genome Sciences Centre (BCGSC), he constructed the first algorithms for RNA seq, chip-seq, and structural rearrangement discovery for the 454 and Solexa sequencing platforms. He later received his PhD in structural and computational biology and molecular biophysics from his work at the Baylor College of Medicine Human Genome Sequencing Center (BCM-HGSC). There he helped develop the BCM-HGSC’s illumina analysis pipeline, capture-resequencing analytics and co-developed capture reagents, both regional and whole exome including some of the largest capture targets ever sequenced. His analytic tools were central to the analysis of one the first personal genomes used for medical diagnostics[Lupski]. Later, he led the team that discovered the molecular cause of DRD in siblings. This information was used, for the first time, to alter the management and medications the children received. Later, he used WES to find a novel gene for a previously undescribed disease, marking one of the first times WES was used to molecularly describe a disease prior to its clinical description.

Tracy Dixon-Salazar, PhD

Dr. Dixon-Salazar’s desire to get her Ph.D. was inspired by her daughter who developed a severe epileptic encephalopathy at the age of 2 years old. She did her Ph.D. and post-doctoral work at the University of California, San Diego where she studied the mechanisms of brain development and synaptic plasticity, identified genetic causes of neurological disorders in children, and investigated precision therapeutics in cell-based and animal models of pediatric brain disease. During her post-doctoral fellowship, and after 16 years of watching daily, unrelenting seizures in her child, Dr. Dixon-Salazar’s research uncovered the driver of her daughter’s epilepsy and identified a precision therapy that saved her daughter’s life.

With more than 15 years of direct research experience, 18 years of non-profit experience, and 21 years caring for a child with a rare disease, Dr. Dixon-Salazar embodies the concept that patient-centered, patient-inclusive research is the key to meaningful medical solutions. She is an accomplished scientist, skilled strategist, highly sought-after speaker, and staunch advocate for rare disease, medical research, and patient-centricity.

Daniel Lowenstein, MD

Dr. Lowenstein is the Robert B. and Ellinor Aird Professor and vice chair in the Department of Neurology at UC San Francisco. He is also currently the executive vice chancellor and provost at UC San Francisco. Dr. Lowenstein received his BA degree in Mathematics from the University of Colorado, an MS degree in Man-Environment Relations from The Pennsylvania State University, and an MD degree from Harvard Medical School. He completed his residency in Neurology at UCSF and served a two-year fellowship in Nobel laureate Stanley Prusiner’s Laboratory, investigating the sequence homology of the PrP gene in various rodent species. Dr. Lowenstein joined the faculty in the Department of Neurology at UCSF, where he established the UCSF Epilepsy Research Laboratory. His laboratory studies have addressed the fundamental mechanisms of neuronal network remodeling that occur during epileptogenesis or the process in which a normal network transforms into a hyperexcitable network capable of producing or relaying seizure activity. He also helped create the Epilepsy Phenome/Genome Project (EPGP), an international, multi-institutional, collaborative study that is collecting detailed phenotype date on 5,250 subjects with specific forms of epilepsy. Dr. Lowenstein’s main clinical research has been on the management and treatment of patients with status epilepticus or unusually prolonged seizures. His epilepsy research has been recognized by several honors and awards, including the American Epilepsy Society’s 2001 Basic Research Award, 2012 Lennox Award given to a clinician-scientist who is the most outstanding investigators in the field of epilepsy research and the Ambassador Award from the International League Against Epilepsy.

Dr. Lowenstein has also helped to define scientific policy on a national level, having served on a number of committees, including as a member of the Advisory Council of the National Institute of Neurological Disorders and Stroke (NINDS) and Chair of the NINDS Clinical Trials Subcommittee from 2000-2004.  Dr. Lowenstein was elected to the National Academy of Medicine for 2017, one of the most prestigious honors in the field of health and medicine.

Family and Community Advisors

Celeste McDonnell

Celeste has 5 children, 2 step-children, and 11 grandchildren. Two of her grandchildren have been diagnosed with SLC13A5. Celeste holds a BA from University of Oregon and a Masters in Education from Lewis and Clark. Early in her career, she worked as a special education teacher. Celeste is determined to help improve the lives of those living with the SLC13A5 disease.

Blaine Nye, Ph.D, M.B.A., M.S.

Blaine is President of Stanford Consulting Group, Inc. He holds degrees from University of Washington, Stanford University, and Stanford Business School. Before founding SCG in 1981, Blaine played professional football for the Dallas Cowboys.​​

Maureen Grover

Maureen has 3 children, Landon (9), Brady (8) and Alaina (5). Brady and Alaina have been diagnosed with the SLC13a5 mutation. Her family is from sunny Florida and they spend much of their time on the soccer field or by the pool. As a family they have traveled across the country for answers, treatment and research.

Prasad Vattikutti

Prasad Vattikutti lives in Texas with his wife and 2 young children who have SLC13A5 mutations.