Team

TESS Research Foundation relies on a dedicated team of Staff, Board of Directors, Scientific Advisory Board and Family & Community Advisors to fulfill its mission. To learn more or get involved, contact info@tessfoundation.org.

Staff

TESS Research Foundation’s leadership combines key paid staff with dedicated volunteers aligning to oversee all research initiatives, family education, and support.

Kimberly Nye

Founder, Board Chair & Executive Director

kim@tessfoundation.org

Kim is the Founder, President and Executive Director of the TESS Research Foundation, a 501(c)(3) public charity that aims to find better treatment options and ultimately a cure for SLC13A5 Epilepsy. TESS Research Foundation is a current Chan Zuckerberg Initiative Rare As One grantee.

Kim holds a BA from Princeton University where she graduated magna cum laude and Phi Beta Kappa. She did a postbac at Oxford University. Kim is actively involved with the pediatric neurology and medical genetics community. Additionally, Kim serves on Rare Epilepsy Network (REN) and Epilepsy Leadership Council (ELC). She is also a lay reviewer for CURE Epilepsy and the Epilepsy Foundation’s Shark Tank Competition. Kim lives in California with her husband and four kids. Two of their children have SLC13A5 Epilepsy. Kim has witnessed 100,000s of seizures—a claim she hopes fewer moms will be able to make five years from now. Kim works tirelessly as a full-time volunteer, dedicating herself personally and professionally to the TESS community and the mission of curing SLC13A5 Epilepsy.

Tanya Brown, PhD

Scientific Director

tanya@tessfoundation.org

Tanya is the Scientific Director for TESS Research Foundation. She spent 12 years as a bench scientist studying developmental biology and developmental neuroscience. Tanya first realized her passion for science in the Pacific Northwest studying the impact of oil on cardiac development in fish at National Oceanic and Atmospheric Administration (NOAA). She then received a National Science Foundation (NSF) Graduate Student Fellowship for her investigation of oligodendrocyte and myelin development. She completed her PhD in Cell Biology, Stem Cells, and Development from the University of Colorado and then received an NSF Fellowship for her post-doctoral research studying neuronal innervation of the skin. She has a passion to make science accessible and collaborative to drive research forward. Tanya lives in Seattle with her husband. She enjoys running and spending time outside. This paid position is made possible through our Chan Zuckerberg Initiative Rare As One Grant.

Lindsay Okamoto, MA

Development Director

lindsay@tessfoundation.org

Lindsay is the Development Director for TESS Research Foundation and a connector of people, ideas, and opportunities. She has 20 years of experience in development and communications, including tenure as director of stewardship and senior communications officer at the Lucile Packard Foundation for Children’s Health and Stanford’s Medical Center Development. In these roles, Lindsay founded and executed principal- and major-gift stewardship programs and managed the teams responsible for shepherding gifts totaling $60+ million annually. She is most grateful for the relationships formed with patients, families, physicians, researchers, and donors. Lindsay believes that giving is joyful and loves sharing stories about the impact of philanthropy.

Lindsay earned an MA in social service administration from the University of Chicago and a BS in psychology from UC Davis. She previously held communications, community-based mental-health, and research positions in the Silicon Valley, Austin, Chicago, Portland, and Alexandria, VA. An avid reader and lifelong swimmer, Lindsay lives in the Bay Area with her family. This paid position is made possible through our Chan Zuckerberg Initiative Rare As One Grant.

Cat Gasol, MA

Director of Communications

cat@tessfoundation.org

Catherine (Cat) 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 Epilepsy and knows how devastating this disease is for families. Cat is determined to help raise awareness, connect families, and find a cure. This is a volunteer position.

Emily Hsu

Database Manager & Administrative Assistant

emily@tessfoundation.org

Emily oversees all databases and assists with administration of TESS operations. She is the organization’s webmaster and produces educational outreach videos. Emily started as a volunteer with TESS even before our formal founding. Emily has a BA in English from Bryn Mawr College. This paid position is made possible through our Chan Zuckerberg Initiative Rare As One Grant.

Nicole Windisch, LPN

US Family Outreach Coordinator

nicole@tessfoundation.org

Nicole welcomes TESS families to the SLC13A5 Epilepsy community and shares resources and information. She plays a key role in raising awareness. Nicole has created several successful fundraisers and is determined to help find a cure. Meredith’s daughter has SLC13A5 Epilepsy. Nicole found the TESS Research Foundation while researching her daughter’s condition online. Nicole lives in New York with her husband, Rich, and their 3 kids, James, Matthew, and Meredith. This is a volunteer position.

Maria Geslin

International Family Outreach Coordinator

maria@tessfoundation.org

Maria leads TESS’ international family outreach and helps strengthen our European network. Her daughter Alice has been diagnosed with SLC13A5 Epilepsy. While searching for other families with the same condition, Maria learned about TESS Research Foundation. Maria earned a BS in Banking and Stock Exchange from the Academy of Economic Studies in Bucharest and has been an ACCA affiliate since February 2014. Maria is responsible for compliance for a regulated company in Luxembourg. Maria lives in Luxembourg with her husband, Laurent, and their two daughters Sophie and Alice. This is a volunteer position.

Mirit Callioni

Accounting Consultant

Mirit is responsible for implementing and managing the financial processes of the Foundation. Non-profit finance and accounting has been her passion since she began volunteering with TESS in 2016. Mirit holds a BS in Finance from San Jose State University and has years of accounting experience in managing financials and accounting for small to medium-sized businesses. She lives in California with her husband and two sons. This is a volunteer position.

Board of Directors

TESS Research Foundation’s Board is all-volunteer without compensation. We appreciate their dedication, time, and talent.

Kimberly Nye, Board Chair & Executive Director

Kim is the Founder, President and Executive Director of the TESS Research Foundation, a 501(c)(3) public charity that aims to find better treatment options and ultimately a cure for SLC13A5 Epilepsy. TESS Research Foundation is a current Chan Zuckerberg Initiative Rare As One grantee.

Kim holds a BA from Princeton University where she graduated magna cum laude and Phi Beta Kappa. She did a postbac at Oxford University. Kim is actively involved with the pediatric neurology and medical genetics community. Additionally, Kim serves on Rare Epilepsy Network (REN) and Epilepsy Leadership Council (ELC). She is also a lay reviewer for CURE Epilepsy and the Epilepsy Foundation’s Shark Tank Competition. Kim lives in California with her husband and four kids. Two of their children have SLC13A5 Epilepsy. Kim has witnessed 100,000s of seizures—a claim she hopes fewer moms will be able to make five years from now.

Amber Black, Vice Chair

Amber is a mother of Rowan, a child with slc13a5 disorder, living in Fergus, Ontario, Canada. She holds a BA from the University of Waterloo and a Paralegal Certificate from George Brown College, and is a licensed Paralegal with the Law Society of Ontario. She currently coordinates a team of representatives assisting tenants throughout the region and across the country. When she is not working or playing with Rowan, you can usually find her experimenting in the kitchen, reading, learning, going for walks, listening to a podcast, or playing a board game.

Paula Gani Noah, Secretary

Paula is an attorney who has had extensive in-house experience with various Silicon Valley technology companies. In addition, she previously provided pro bono legal counsel to TESS. From 2012 to 2020, she served as a parent advisory board member to the Stanford Autism Center at Lucile Packard Children’s Hospital. She holds a B.A. in Human Biology from Stanford University and a J.D. from the University of Wisconsin.

Kevin McDonnell, Treasurer

Kevin 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 BA 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.

Courtney Lodato Alberti, Director

Courtney is Director of External Communications for Stanford Health Care and Stanford University School of Medicine, where she has led large communications initiatives for the last decade. Prior to joining Stanford, she served as Vice President of a public relations agency in San Francisco. A graduate of University of California, Santa Barbara, Courtney worked as a journalist and radio producer 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.

Lee Scheuer, Director

Lee is founder and Chairman of International ProInsurance Services, Menlo Park, CA. Lee received an undergraduate degree from the University of Miami, and a graduate degree from American College. Before his career with New York Life, Lee was a teacher working with special needs teens. Lee has served on many advisory boards of insurance companies such as Travelers, Guardian, and Anthem Blue Cross (CA). He has also served on 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 Maine, and he is also a supporter of the Literacy Program of Mid-Coast Maine.

Lee and his wife Kim have two children and three grandchildren. Lee enjoys spending time with his family, camping, fishing, snow skiing, sailing, woodworking, traveling, and spending time with and assisting special needs children/adults.

E. Robert Wassman, MD, Director

Dr. Wassman has pioneered the introduction of genetic testing and personalized medicine. 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 across reproductive genetics, cancer, and neurodevelopmental disabilities including autism. His strategic insights and “quick study” abilities have enabled him to achieve numerous “firsts.” Currently he serves as an adviser to a number of start-ups and other clients.

He has served as Chief Medical Officer for multiple companies. He has co-founded several successful ventures, and served as a consultant to clinical laboratories, Biotech companies, investor groups, regulatory agencies, payers and legal firms. Bob has laboratory and general operational, business development, medical affairs, marketing/sales and reimbursement/managed care experience. He is a graduate of Yale University and Albany Medical College and Board Certified in Pediatrics and Medical Genetics.

Board of Directors Emeritus

Jordan Lodato-Hunt, MSW, LCSWA

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.

Dennis McDonnell

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 Epilepsy.

William Nichols, MBA, CPA

Bill retired in 2000 as Treasurer of the William and Flora Hewlett Foundation. Bill’s other endeavors included Associate Professor of Accounting and Finance at San Jose State University, Controller and Assistant Treasurer of Saga Corporation and Certified Public Accountant with Price Waterhouse. Bill has a wide range of experiences serving as a Director on numerous Boards including the Lucile Packard Foundation, Avenidas, Channing House, and the Investment Fund for Foundations. Bill is a graduate of Stanford University.

Blaine Nye, PhD, MBA, MS

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.​​

Zachary Nye, PhD

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 Epilepsy.

Judi Rees

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 had a rare genetic epilepsy, to help our pediatric epilepsy community.

Scientific Advisory Board

TESS Research Foundation’s all-volunteer Scientific Advisory Board (SAB) is comprised of leading clinicians, researchers, and biopharma experts. They offer guidance on clinical trials, develop treatment guidelines, review research grants, spearhead our International Research Roundtable, and serve as international Ambassadors for SLC13A5 Epilepsy.

Matthew Bainbridge, PhD

Dr. Matthew 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 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. His analytic tools were central to the analysis of one of the first personal genomes used for medical diagnostics. He led the team that discovered the molecular cause of Dopa-responsive dystonia in siblings subsequently used to alter management and medications. He used WES to find a novel gene for a previously undescribed disease marking a first to molecularly describe a disease prior to its clinical description. Currently he is the Associate Director of Translational Genomics at the Rady Children’s Institute for Genomic Medicine where he heads up a team looking at the causes of pediatric cardiomyopathy, intellectual disability, seizures and other disorders.

Dawn Blessing, MBA

Ms. Blessing is currently Vice President of Scientific Strategy and Corporate Development at Zogenix. Prior to Zogenix, she served as Senior Vice President Corporate Development at Modis Therapeutics and previously Vice President, Corporate Development at Audentes Therapeutics. She has 30 years of experience in biotechnology finance, business development, and alliance management. Over this period, Ms. Blessing has focused on programs for rare diseases and the application of genetic information to drug development. Before joining Audentes, Ms. Blessing served as Senior Director, Business Development and Alliance Management at 23andMe, and Director of Business Development at BioMarin Pharmaceutical.

Daniel Lowenstein, MD

Dr. Lowenstein is the Executive Vice Chancellor, Provost and Professor in the Department of Neurology at UC San Francisco. Dr. Lowenstein received his BA in Mathematics from the University of Colorado, an MS in Man-Environment Relations from The Pennsylvania State University, and an MD degree from Harvard Medical School. His laboratory studies have addressed how a normal network transforms into a hyperexcitable network capable of producing seizure activity. He helped create the Epilepsy Phenome/Genome Project (EPGP), an international, multi-institutional, collaborative study collecting data subjects with specific forms of epilepsy, and Epi4K, the follow-up project that carried out whole exome sequencing on the samples from EPGP and other large cohorts. His clinical research has been on the management and treatment of patients with status epilepticus or prolonged seizures. He has served 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. In recognition of his many contributions to American medicine, he was elected to the National Academy of Medicine in 2017.

Ana Pajor, PhD

Dr. Ana Pajor is an expert in sodium-coupled transporters, particularly the Na+/dicarboxylate cotransporters (NaDC) from the SLC13 family. She first isolated the cDNA coding for NaDC1. Her lab made fundamental discoveries in the area of structure-function relationships in the SLC13 family, as well as identifying bacterial homologs of NaDC1. Later, she worked on the Na+/citrate transporter NaCT (SLC13A5) to characterize small molecule inhibitors of transport and genetic mutations that result in the citrate transporter disorder (SLC13A5 Deficiency/EIEE25). Dr. Pajor has received several research grants from TESS Research Foundation. She was the recipient of the first “TESS Research Superhero” award. Dr. Pajor joined the TESS Scientific Advisory Board after retiring as a Professor from the Skaggs School of Pharmacy and Pharmaceutical Sciences at UCSD.

Brenda Porter, MD, PhD

Dr. Porter is currently a Professor of Neurology at Stanford University Medical Center. 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 and her fellowship in 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 that there will be 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 brenda@tessfoundation.org.

Hugh Rienhoff, Jr., MD

Dr. Rienhoff is a physician, entrepreneur and founder of several biopharmaceutical companies. He presently serves as CEO of Imago BioSciences, a clinical-stage, venture-backed company focused on the treatment of hematologic malignancies. Previously Dr. Rienhoff was the founder and CEO of FerroKin Biosciences, a clinical stage company acquired by Shire in 2012. He has more than 25 years experience as both a venture investor and entrepreneur in the life science sector. He was a partner at New Enterprise Associates and later, a director of Abingworth Management Ltd., running their US operation. He received his M.D. from the Johns Hopkins University School of Medicine and his B.A. from Williams College.

Family & Community Ambassadors

We are grateful to our volunteer Family & Community Ambassadors, all of whom have a loved one with SLC13A5 Epilepsy. These Ambassadors use their voices to advocate for TESS Superheroes who can’t speak for themselves.

Maureen Grover

Maureen has 3 children, Landon, Brady, and Alaina. Brady and Alaina have been diagnosed with SLC13A5 Epilepsy. Her family is from Florida, and they spend much of their time on the soccer field or by the pool. Maureen helps moderate our private Facebook group for families affected by SLC13A5 Epilepsy.

Celeste McDonnell

Celeste has 5 children, 2 step-children, and 11 grandchildren. Two of her grandchildren have been diagnosed with SLC13A5 Epilepsy. Celeste has graciously engaged her friends and family to raise awareness and research funds for TESS.

Lily Nye

Lily has three siblings, two of whom have SLC13A5 Epilepsy. Lily is a youth Ambassador for TESS and the creator of our TESS Coloring Pages

Maggie Nye

Maggie has three siblings, two of whom have SLC13A5 Epilepsy. Maggie is a youth Ambassador for TESS and our TESS Reporter, interviewing specialists and community members.

Stephen Windisch

Stephen has a niece with SLC13A5 Epilepsy. He is pre-med at Boston College. Stephen enjoys making research publications more accessible for patients and families.

Prasad Vattikuti

Prasad has two children with SLC13A5 Epilepsy. He lives with his wife and children in Texas. Prasad is an outspoken advocate for our families and community.