Kari Luther Rosbeck | President & Chief Executive Officer
Kari joined the TS Alliance in June 2001 and became President and CEO in November 2007. She is responsible for the overall management and administration of the organization. This includes strategic planning, implementation of organizational strategies and evaluation of results, in conjunction with the board of directors, to ensure the organization meets its mission to find a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected. Kari has been involved in nonprofit fundraising and volunteer management for nearly 30 years. During Kari’s tenure as President and CEO, the TS Alliance established a comprehensive research program fostering collaboration with industry and academia to move treatments for TSC forward in a more expedited way. The “Unlock the Cure” research strategy focuses on key points along the drug discovery path: TS Alliance Grants Program promoting young investigators; Drug Screening by establishing a Preclinical Consortium; Clinical Research Consortium expediting implementation of future clinical trials and recruiting for clinical studies; biomarkers identification; and the TSC Natural History Database expansion including a Biosample Repository. “Unlock the Cure” also serves as a capital fundraising campaign, raising more than $10 million for TSC research since August 2011. Because of her leadership, the organization has taken an active role in educating the TSC community about clinical trials to diminish the time for recruitment. In the past nine years, there have been FDA approvals for two therapies to combat infantile spasms, the most catastrophic form of epilepsy that up to a third of infants with TSC may experience, and three approvals of a drug with a TSC indication, specifically SEGA, AMLs and partial-onset epilepsy associated with TSC. Kari previously served as Executive Vice President, overseeing the national volunteer outreach program and was responsible for fund development. She developed and implemented a vast national network of more than 30 volunteer branches called Community Alliances; increased volunteer participation from 90 individuals to more than 2,000; and through her involvement in special events and major gift fundraising, helped increase the annual revenue by more than 50 percent. Kari graduated with a BA degree in Theatre from the State University of New York at Albany and upon graduation founded a theatre company with fellow graduates in New York, NY. After the loss of her first child, Noell, to sudden infant death, she dedicated her career to helping other families. Kari is the proud mother of four sons and grateful to her husband Chris for his unending support. When not working, she enjoys traveling with her family, playing golf and being an avid Minnesota Vikings fan. Read Kari’s Profile in Success.
Richard Gollub, CPA | Chief Financial Officer
Rich is proud to serve as the Chief Financial Officer of the TS Alliance. Licensed as a CPA in the District of Columbia, he has held positions in accounting and finance for more thanf 25 years. After kicking off his career in public accounting, Rich then worked for a real estate developer before settling into the nonprofit world in 2000. He served as the Chief Financial Officer of charitable organizations including the Children’s Defense Fund prior to joining the TS Alliance in 2015. With an undergraduate degree in elementary education from the University of Pittsburgh, Rich spent his youth teaching and as a journeyman carpenter before earning a Master of Accountancy from George Washington University and joining the world of finance. Born and bred in Philadelphia, Rich enjoys biking, hiking, ping pong, and watching sports (trust the process!). He lives in Silver Spring with his wife Jill and dog, Keiko, while enjoying visits with his grown children, Victor and Rebecca.
Steven L. Roberds, PhD | Chief Scientific Officer
Steve joined the TS Alliance staff in 2011 as Chief Scientific Officer. In this role, Steve leads the development and execution of the TS Alliance’s research strategy through partnerships and conversations with all stakeholders, including individuals and families affected by TSC, basic and clinical researchers, healthcare providers, government agencies involved in medical research, and other non-profit organizations. In 2012, Steve led the implementation of the first TSC Clinical Consensus Conference since 1998. In 2015, he worked with program officers at the National Institutes of Health to design and carry out a workshop to update the TSC research strategy for the next ten years. To move this updated strategy forward, Steve drove the creation of two TS Alliance-led collaborative projects: the TSC Preclinical Consortium to accelerate testing of potential new treatments and the TSC Biosample Repository to collect and share biosamples from individuals enrolled in the TSC Natural History Database. Steve was awarded his PhD in Pharmacology from Vanderbilt University in 1992, after which he was introduced to rare disease research as a postdoctoral fellow at the University of Iowa studying the biology and genetics of muscular dystrophies. He then began a 16-year research career in the pharmaceutical industry. Immediately prior to joining the TS Alliance, Steve was an Associate Research Fellow and project leader responsible for driving global project teams toward new human proof-of-concept studies to repurpose Pfizer compounds for new indications. Steve has three grown children and loves exploring all the history, food, and music the Washington, DC area has to offer with his wife Mary.
Dean J. Aguiar, PhD | Director, Preclinical Research
Dean joined the TS Alliance in November 2018 with more than 17 years of research and development (R&D) leadership in biopharmaceutical and medical device industries, leading teams and technologies from discovery to investigational new drug (IND) and investigational device exemption (IDE), a pre-requisite for clinical trial evaluation. He brings an entrepreneurial and collaborative approach to R&D, identifying opportunity, defining strategy and developing a scientific data package to warrant clinical translation of technologies to benefit the patient, the family and care provider. In Dean’s prior role as Program Director at The Hartwell Foundation, he gained significant experience in pediatric disease from oncology and inflammation to neurodevelopmental disorders including autism, ADHD and epilepsy. He provided guidance to academic investigators regarding the scientific evidence and regulatory path required to successfully translate technologies toward commercial viability. He also established partnerships with industry to gain access to proprietary drugs and a possible path for licensing. Dean cofounded Pendant Biosciences, a Johnson & Johnson Innovation JLABS company, with a mission to develop a novel polymer biomaterial for targeted drug delivery improving efficacy and minimizing toxicity. Dean contributed to the leadership team that identified opportunities for the company’s core technology to address unmet patient needs and was responsible for developing an R&D strategy and data package to attract strategic partners. In addition, Dean has a breadth of pharmaceutical R&D experiences from early discovery to clinical translation that provides a unique perspective on project management and mitigating risk. As the former Director of Product Development at Biomimetic Therapeutics, a medical device company, he led a team focused on the development of drug-device combination products and drug-only products bridging the regulatory framework for a drug and a device. Dean’s early career landed him at Pfizer, where he led cross-functional project teams in the areas of inflammation spanning discovery to preclinical development of both small molecules and protein biologic drugs. He played a key role while ensuring a robust decision funnel for translatable cell, animal models and biomarkers of human disease. Dean earned his PhD in Biochemistry from Rush University at Rush Presbyterian St. Luke’s Medical Center in 1996 and completed post-doctoral training at the University of Minnesota. Dean and his wife, Missie, have three boys – Ryan, Cole and Chase.
Taylor Bates | Development Associate
Taylor joined the TS Alliance in April 2019. Before joining the team, Taylor worked in Development at a private school in the Washington, DC area. He hopes his fundraising experience can further the organization’s goal of helping those in need. When not at the office, Taylor likes traveling, camping, hiking, and enjoying live music in DC.
Dani Brunner, PhD | Senior Scientific Advisor / Preclinical Research Leader
Dani is Founder and President of the Early Signal Foundation and Preclinical Research Leader at the Tuberous Sclerosis Alliance. Dr. Brunner has worked on the validation of models of developmental, psychiatric and neurodegenerative disease models for the last 20 years. A major focus of her work has been the establishment and automatization of rodent behavioral tests and novel high throughput preclinical platforms using computer vision and machine learning algorithms to comb behavioral signatures for phenotyping, drug screening and systems biology approaches. As Senior Vice-President of Behavioral R&D at PsychoGenics, she was in charge of large projects focused on back-translation of anti-smoking cessation medication, preclinical cognitive assessment, and studies in neurodegeneration, psychiatry, and autism. As head of the Early Signal Foundation, Dr. Brunner aims to establish analytical systems that integrate human behavioral and “omics” readouts for health care and monitoring in rare disorders, connecting genomic information with behavioral domains, especially those passively captured with wearable sensors. As leader of the preclinical work at the Tuberous Sclerosis Alliance, Dr. Brunner is setting up a large consortium of industrial and academic institutions and experts, to accelerate the development of therapeutics for this devastating disorder.
April Cooper | Director, Community Programs
April joined the TS Alliance in January 2017. She brings 17 years of community experience having chaired the TS Alliance of Orange County and Southern California, helping found the Orange County Golf Tournament, serving on the Comedy for a Cure planning committee since its inception, leading the Southern California Regional TSC Conference and helping to open the first TSC Clinic west of the Mississippi. April received one of the inaugural Volunteer of the Year awards in 2005. She has twin daughters, Abigail and Amelia, with TSC and most recently served on the TS Alliance Board of Directors. Professionally, April spent 28 years in commercial real estate, which concluded with 18 years at GE Capital.
Zoë Fuchs | Science Project Coordinator
Zoë joined the TS Alliance in March 2019 as Science Project Coordinator after volunteering with the organization in early 2018. She graduated from the University of California, Santa Barbara with a degree in Chemical Engineering. Zoë has a passion for preclinical and translational research. As an undergraduate, she studied methods to improve chemotherapeutic efficacy via liposomes and polymer-drug conjugates. Following graduation, she worked for UCLA’s Translational Oncology Research Laboratory, where she studied leukemia and lymphoma and tested novel treatments in a high-throughput lab. After moving from her beloved home state of California, she worked as a Medical Scribe for George Washington University in a wide range of specialist clinics, spending most of her time working at the GW Cancer Center. She is excited to learn more about interplay of advocacy and scientific advancement. When not at work, she spends her time listening to audiobooks, knitting and making sure her three cats don’t torture her yellow lab mix, Gaucho, too much.
Emebet G/Micheal | Senior Accountant
Emebet joined the TS Alliance in May 2017 as a Senior Accountant. She previously worked in various management positions for Cineplex Odeon, Loews and AMC Theatres for 22 years in Washington, DC and Maryland locations while putting herself through college. After attending Montgomery College and the University of Maryland, she earned her Bachelor’s Degree in Accounting in 2002. Following graduation, Emebet worked for 13 years as Accounting Manager for the Association for Childhood Education International (ACEI).
Dena Hook | Vice President, Support Services
Dena has been an educational advocate for more than 25 years. She served as the Technical Assistant Coordinator for the National Parent Training and Information Center (PACER) for over 6 years training educational advocates throughout the country. Dena worked with the Office of Special Education Programs (OSEP) during the reauthorization of the Individuals with Disabilities Education Act in 1997. She is a published author through Incentive Publication authoring “Success with IEPs” and “An IEP Writing Tool” for teachers and school administrators. During her time as CEO of Family and Children First, she ran Part C of the Individuals with Disabilities Education Act Early Childhood Program, Truancy Mediation, and Strengthening Families a Mental Health and Drug Addiction Program for Marion County in Ohio. She is certified as Special Education Mediator through the Juvenile Justice Center of Atlanta and as a Truancy Mediator through the Ohio Supreme Court.
Jaye Isham | Vice President, Communications Strategy
Jaye joined the TS Alliance in 2004 as Director of Communications; he was named Vice President, Communications Strategy in 2013. With more than 30 years of experience in healthcare and nonprofit organizations, Jaye directs the TS Alliance’s expansive communications planning and execution efforts; branding, messaging and marketing strategies; evolving digital communications technology including social networking, videos and interactive media; writing and editing; media relations; and event promotion. During his tenure, the monthly unique visitors to the TS Alliance website have more than doubled, from an average of 17,000 in 2004 to 40,000-plus today. In addition, Jaye has been responsible for directing multiple awareness activities including creating the successful “31 Facts for 31 Days” campaign for TSC Awareness Month, which is now used worldwide each May. He was also instrumental in launching the #IAMTSC public service announcement (PSA) and micro website campaign, which garnered media placement values of more than $1.1 million. Jaye earned a BA degree in Mass Communication from Texas State University. He previously held positions with several nonprofits, including Montgomery Hospice Society, Montgomery General Hospital, National Multiple Sclerosis Society Houston Chapter, and Scott & White Clinic/Hospital in Temple, Texas. An avid movie buff, he spends most of his spare time being bossed around by his four mini pinschers, playing guitar and bicycling. He lives in New Mexico with his husband Larry.
Daniel Klein | Director, Digital Platforms
Dan started volunteering at the TS Alliance in 2011 and joined the staff full time in 2012 as Development Associate. He was named Manager of Donor Relations in 2014 and Director of Digital Platforms in 2019. As a member of the TS Alliance communications team, Dan works to raise awareness of tuberous sclerosis complex through a social media and e-communication strategy focused on TS Alliance initiatives, upcoming events, breakthroughs in research and stories from the TSC community. He is also responsible for directing several digital initiatives including TSC Now, a podcast series from the TS Alliance; TSC TV, a live and recorded video broadcast series; and TSC Matters, a community e-newsletter. Dan earned a BS degree in Journalism from Ohio University. When he’s not in the office he is exploring new local breweries or spending time with his beautiful wife Kara and his puppy Oshie.
Justin Martucci | Database Project Manager
Justin joined the TS Alliance in May 2018 as Database Project Manager. Justin supports the efforts of the Development and Finance teams through keeping an up-to-date and clean donor database system, ensuring smooth donor relations and timely and accurate financial information. Justin is originally from outside of Philly, studied film and photography at Ithaca College, and performed a term of service with AmeriCorps in Burlington, VT before moving to Washington, DC. Having previously worked with databases in non-profit settings, Justin is humbled and excited to serve the TSC community to the best of his ability. In his free time, Justin enjoys homebrewing, making art, spending time with his wife and cats, and watching Star Trek.
Shelly Meitzler | Regional Program Manager, East
In January 2017, Shelly joined the team on as National Walks Coordinator; in September 2017, she joined the staff full time. Shelly has been involved with the TS Alliance for the past decade, including serving as both Community Alliance Chair and Step Forward to Cure TSC Chair in Delaware/Lehigh Valley. Last year, she delivered an inspirational speech at the TS Alliance Congressional Briefing on Capitol Hill chronicling her journey as a TSC mom to Ashlin and Mason. She is grateful to have an extended, supportive family that has helped navigate the journey of TSC and allowed her to be involved on various levels in the community. Shelly’s story has provided hope as ongoing TSC research has offered new insight over the last decade and solidified her determination to continue to advocate, educate, and raise vital research dollars for all those impacted by TSC. In her free time, she enjoys spending time with family and friends, laughing, enjoying life, and the occasional hockey game with her husband, Matt.
Lisa Moss | Senior Director, Donor Relations
Lisa joined the TS Alliance in July 2012, and and she focuses on fundraising efforts for the organization. Fund development is essential to provide support services and drive research forward, and the development team builds relationships with private, corporate and industry donors while raising valuable resources through corporate sponsorships, grants, appeals, individual gifts, special events and the Step Forward to Cure TSC walks. Lisa and her team raised more than $550,000 to support the 2014 World TSC Conference held in Washington, DC, where families, individuals with TSC, researchers and physicians came together for three days to attend meetings and connect with the TSC community. The “Unlock the Cure” research initiative has raised more than $10 million since its inception and is targeted to fund research, advance a drug screening program, develop a clinical research network, identify biomarkers and expand the TSC Natural History Database. Lisa’s introduction to the TS Alliance was in 2006 when her son, Evan, was diagnosed with TSC. The following year she began volunteering by participating in the March on Capitol Hill and attending the DC Food & Wine Tasting event, which marked the beginning of a long-standing relationship with the TS Alliance. From 2008-2012 Lisa served as Co-Chair of the TS Alliance of Metro DC. In 2012, Lisa produced Art for a Cure and the first Step Forward to Cure TSC National Walk on the Mall in DC. In addition to her volunteerism and activism for TSC, Lisa is also involved in the epilepsy community and served on the Board of Directors for the National Epilepsy Foundation. In 2011, Lisa led a marketing and fundraising campaign for 4 Paws for Ability, a 501c3 that trains service dogs for children, resulting in raising the funds necessary for her son’s service dog and several additional children. In 2007 Lisa and her husband, Rob, co-founded SeizureTracker.com, a database-driven website that acts as a comprehensive seizure diary system and free resource to the epilepsy community. Lisa and her family live in Virginia.
Jo Anne Nakagawa | Director, Clinical Projects & TSC Clinic Liaison
Jo Anne joined the TS Alliance staff in August 2005 with 30 years of experience, working in various laboratory and clinical research activities at the University of California Los Angeles (UCLA), where she earned her BA in Biology. Her 30 years at UCLA include 16 years in regulatory management and coordination of pediatric clinical trials and preparation of and oversight of physician-initiated investigational new drug (IND) trials, which included the clinical trial for treatment of newly diagnosed infantile spasms that helped get vigabatrin approved in the United States. At the TS Alliance, she is the administrative project leader of the TSC Natural History Database, which now has more than 2,000 participants due to her leadership, and the TS Alliance TSC Biosample Repository. Jo Anne also serves as the liaison between the organization and the 68 TSC Clinics who have met clinical care standards recommended and approved by the TS Alliance Board of Directors to be recognized as a center that provides care for those affected. She enjoys gardening, working on art projects, watching her favorite TV shows on DVD while on the treadmill, and visiting her three grandchildren in Northern California as much as possible.
Gail Saunders | Senior Associate Director, Community Programs
Gail joined the TS Alliance in 2005 as the Office Manager, providing administrative and logistical support for the staff and board of directors. Over the years, her enthusiasm grew for event planning and community support. Gail’s strengths include planning and executing events, and identifying and cultivating relationships to broaden our Step Forward to Cure TSC walk program and other community campaigns. Both as a staff lead on walks and supporting our development department in growing our fundraising efforts, she shares her skills, hoping each day to make a difference. By far her greatest joy and accomplishment is her connection to her family and surpassing the mission to connect as a community, raise awareness of the disease and inspire others to join the fight against TSC.
Julie Scroggins | Regional Program Manager, West
Julie joined the TS Alliance in January 2018 as Regional Program Manager, West. She has been involved with the TS Alliance since her oldest daughter was diagnosed with TSC in 2009. Since then, she has served on the Government Action Team, Science and Medical Committee, Audit Committee and most recently on the Board of Directors. In 2011 she founded Bcureful, a grassroots nonprofit devoted to advancing research toward the cure for TSC as well as raising public awareness of the disorder and helping to bring expert medical care and support to people where they need it. She is proud of everything Bcureful has accomplished to date and looks forward to watching its new leadership continue to grow the organization. Professionally Julie spent 37 years in the automotive industry and earned national recognition for her efforts at marketing to — and elevating the automotive experience for — women. Julie and her husband Dave have three children, Mary Ann, Chris and Mabel. She enjoys spending free time with family and friends and meeting new people.
Katie Smith | Director, Government & Global Affairs
Katie joined the TS Alliance staff in 2006. She currently oversees the organization’s international outreach efforts, directs government advocacy efforts and co-chairs TSC International. During her tenure with the TS Alliance, Katie has implemented our Global Alliance program, which currently includes formal partnerships with Israel, Canada, Mexico, Thailand, India and Hungary.
Ajee’ Spencer | Administrative Assistant
Ajee’ joined the TS Alliance in May 2019. Prior to joining the team, Ajee’ worked in Alumni Relations at Saint Joseph’s University in the Philadelphia area. Before that she worked for the China American Psychoanalytic Alliance, a virtual non-profit that develops and promotes mental health services in China by training Chinese mental health professionals as psychodynamic psychotherapists. She believes her experience working alongside volunteers in the non-profit industry will coincide with the overall objectives of the organization. When not at the office, Ajee’ enjoys cinema, shopping, and live music concerts.