Kari Luther Rosbeck | President & Chief Executive Officer
Kari joined the TSC 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 more than 30 years. During Kari’s tenure as President and CEO, the TSC 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 and has also served as a capital fundraising campaign with more than $17 million raised 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, including pivotal trials that have led to two FDA-approved drugs specifically for 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 Trent, Bradey, Leigh and Rhys 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 TSC Alliance. Licensed as a CPA in the District of Columbia, he has held positions in accounting and finance for more than 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 TSC 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, Lucy, while enjoying visits with his grown children, Victor and Rebecca, and granddog Noodle.
Steven L. Roberds, PhD | Chief Scientific Officer
Steve joined the TSC Alliance staff in 2011 as Chief Scientific Officer. In this role, Steve leads the development and execution of the TSC Alliance’s research strategy through partnerships and conversations with all stakeholders, including individuals and families affected by TSC, basic and clinical researchers in academia and industry, healthcare providers, government agencies involved in medical research, and other non-profit organizations. Steve led the implementation of the 2012 TSC Clinical Consensus Conference and an update to the consensus guidelines in 2021. Together with the CEO, CFO, and Board, he developed a seven-year Research Business Plan beginning in 2019 to grow the TSC Alliance’s research programs, including a Preclinical Consortium to accelerate testing of potential new treatments, a Biosample Repository to collect and share biosamples from individuals enrolled in the TSC Natural History Database, a Clinical Research Consortium, a TSC Learning Healthcare System, Innovation Workshops, conferences, and grants. 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 TSC 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 TSC 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 TSC 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.
Christen joined the TSC Alliance as a grant writer consultant in July 2021. She has three years of freelance writing experience including research and a variety of content creation and editing that contribute to her current role as a grant writer. She previously worked with the organization from 2012-2018 in community outreach and conference management and is enjoying her reunion with the TSC community. She enjoys her husband and three active kids, running, reading, writing… and lattes.
April Cooper | Vice President, Community Programs
April joined the TSC Alliance in January 2017. After spending 17 years volunteering in the TSC community. She led the most successful event in the organization’s history, the 45th Anniversary Gala, raising more than $1 million. April transformed community programs and fundraising during the 2020 pandemic including converting 28 local walks into one national virtual walk run ride event in 8 weeks and raising $680,000. She co-founded one of the first Community Alliances and chaired both the TSC Alliance of Orange County and TSC Alliance of Southern California for over 15 years. In that role, she co-founded and chaired the Orange County Golf Tournament that raised over $8M in seven years; served on the Comedy for a Cure® planning committee since its inception; led the first SoCal Regional TSC Conference; and worked to create and open the first TSC Clinic west of the Mississippi. April received an inaugural Volunteer of the Year award in 2005. She has twin daughters, Abigail and Amelia, with TSC and is devoted to improving their challenging TSC journey. In 2015, April briefly served on the TSC Alliance Board of Directors before she joined the staff and began a second career. Prior to joining the TSC Alliance, April spent more than 25 active years bustling to raise the corporate ladder in commercial real estate and now she enjoys spending every day fighting for everyone impacted by TSC.
Zoë Fuchs | Science Project Coordinator
Zoë joined the TSC 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 TSC 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).
Jaye Isham | Senior Vice President, Strategic Communications
Jaye joined the TSC Alliance in 2004 as Director of Communications. He was named Vice President, Communications Strategy in March 2013 and then Senior Vice President, Strategic Communications in April 2021. Jaye is responsible for developing, integrating and executing all the organization’s vast communications efforts, including branding, messaging, educational materials, digital initiatives, virtual resources, social media and public/media relations. He also serves as a senior strategist, counselor and advisor to the organization’s President & CEO, Board of Directors and department heads. Over the years, Jaye has directed four redesigns of the expansive TSC Alliance website; worked with editors/film producers, medical professionals, volunteers and celebrities to create multiple educational and promotional videos; and directed creative aspects/production for all the organization’s major events and conferences. In the early days of social media, he created a Facebook TSC Discussion Group, which eventually grew to more than 10,000 members and is now the largest online TSC forum in the world. In addition, Jaye has been responsible for creating and implementing multiple awareness activities, including the highly successful “31 Facts for 31 Days” campaign for TSC Awareness Month, which was used worldwide each May for many years and eventually became “15 Facts for 15 Days” leading up to TSC Global Awareness Day on May 15. He was also instrumental in helping launch the #IAMTSC public service announcement and micro website campaign, which garnered media placement values of more than $1.1 million. Jaye played a key role in founding both the Infantile Spasms Awareness Network in 2015 and the Seizure Action Plan Coalition in late 2020, both of which serve as models for how rare disease nonprofit organizations can successfully partner together to impact awareness and educational efforts. Jaye lives in New Mexico with his husband Larry.
Daniel Klein | Director, Digital Platforms
Dan started volunteering at the TSC 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 TSC Alliance communications team, Dan works to raise awareness of tuberous sclerosis complex through a social media and e-communication strategy focused on TSC 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 by the TSC Alliance; TSC TV, a live and recorded video broadcast series; TSC Matters, a community e-newsletter; and TSC Alert, an e-newsletter for researchers and clinicians. Dan earned a BS degree in Journalism from Ohio University. He enjoys exploring new local breweries, rooting for the Washington Capitals, traveling and spending time with his beautiful wife Kara, his son Teddy and his dog Oshie.
Justin Martucci | Development Systems Manager
Justin joined the TSC Alliance in May 2018 as Development Services 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 | Director, Community Education & Resources
Shelly joined the TSC Alliance TSC Alliance in January 2017. After spending 14 years volunteering in the TSC community, including serving as Community Alliance Chair, Step Forward to Cure TSC Chair in Delaware/Lehigh Valley and Education Parent Mentor. Her background is business management. Experiencing the need to advocate educationally and medically for her family when their journey began with TSC two decades ago, Shelly realized she wanted to work alongside and empower TSC families by providing resources and support to advocate for themselves and their children to secure the services they are entitled to receive and to realize their full potential—no matter how complex their journeys are to get there. She has been supporting TSC families and has conducted school meetings and TSC trainings and provides tremendous insight as a parent having walked the TSC journey – twice. Her drive and passion have been fueled by her two children with TSC, Ashlin and Mason, and her daughter, Mikenna. Shelly completed the Special Education Advocate Training 1.0 through the Council of Parent Attorneys and Advocates and is currently completing the Special Education Advocate Training 2.0 through the Council of Parent and Attorneys and Advocates.
Lisa Moss | Vice President, Donor Relations
Lisa joined the TSC Alliance staff in July 2012 as Director, Donor Relations, and was subsequently promoted to Senior Director in August 2015 then Vice President in March 2021. Lisa oversees the TSC Alliance’s fundraising efforts to ensure the organization is able to provide essential support services and drive research forward. Her development team focuses on building relationships with private, corporate and industry donors while raising valuable resources through corporate sponsorships, grants, appeals and individual gifts. Starting in 2019, Lisa assumed greater responsibility for cultivating and securing leadership gifts to underwrite the TSC Alliance’s research platform to provide increased funding to accelerate new treatments forward in an expedited way, which has resulted in $4.6 million in contributions. Lisa was first introduced to the TSC Alliance 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 organization. From 2008-2012, Lisa served as Co-Chair of the TSC Alliance of Metro DC. In 2012, Lisa produced Art for a Cure and the first Step Forward to Cure TSCÒ National Walk on the Mall in DC, which eventually led to her joining the TSC Alliance staff full-time. Lisa has always been interested in giving back and in 2007 she and her husband, Rob, co-founded SeizureTracker.com, a database-driven website that acts as a comprehensive seizure diary system and free resource. Lisa always says she is incredibly grateful for the guidance and support of the TSC families and individuals who led the way through their experiences with TSC. Her hope is for a better future for the TSC community and that she can repay that gratitude through her work at the TSC Alliance.
Jo Anne Nakagawa | Director, Clinical Projects & TSC Clinic Liaison
Jo Anne, a native Californian, joined the TSC Alliance staff in August 2005 after a 30-year career in clinical and basic research activities at the University of California Los Angeles (UCLA), where she earned her BA in Biology. She is proud of her regulatory coordination of a physician-initiated multicenter clinical trial for treatment of newly diagnosed infantile spasms in the 1990s that helped get vigabatrin approved in the United States. At the TSC Alliance, she led the development and implementation of the Natural History Database in 2006 and Biosample Repository in 2016 and transitioned responsibility of these research projects in 2020 to Gabrielle V. Rushing, PhD, Associate Director of Research. Jo Anne serves as the liaison between the TSC Alliance and the 52 TSC Clinics and 13 TSC Centers of Excellence in the United States and is staff lead of the TSC Clinic Committee, which evaluates new clinic applications and renewals. After living in Northern Virginia for 14 years and working from the TSC Alliance national headquarters in Silver Spring, MD she and her husband, Stephen, moved back to her hometown in the San Francisco Bay area. She enjoys gardening, attending collegiate women’s basketball games at nearby Stanford University, watching her favorite TV shows on DVD while on the treadmill and spending time with her three granddaughters as much as possible.
Ashley Pounders, MSN, FNP-C | Director, Medical Affairs
Ashley has worked with the TSC Alliance on various projects since 2016 and has joined full time as the Director, Medical Affairs in 2020. In this role, Ashley provides information and assistance to constituents needing help accessing clinical care and FDA-approved treatments for tuberous sclerosis complex (TSC). She is also leading the development of a new online “TSC Navigator” tool to help individuals and families maneuver the intricate TSC healthcare system and proactively manage their care, and driving the implementation of a “TSC Learning Healthcare System” over the next few years. Ashley brings with her 13 years of experience within the nursing profession. She obtained her MS in Nursing in 2018 from Purdue University and her BS in Nursing in 2007 from Baptist College of Health Sciences in Memphis, Tennessee. Ashley served as the lead coordinator for the TSC Center of Excellence at the LeBonheur Children’s Hospital in Memphis from 2016 through 2019. In 2018, Ashley played a major role in assisting with the inaugural TSC Nursing Conference in Dallas, Texas. Ashley also was part of many clinical trials and retrospective research projects. She received a Daisy Award during her time at LeBonheur for facilitating process and compassionate changes to better assist the TSC patient population. In her spare time, Ashley enjoys spending time with husband and three boys, gardening and training for the next Ironman.
Gabrielle Rushing, PhD | Associate Director, Research
Gabrielle joined the TSC Alliance staff in December 2019 and works remotely from Nashville, TN. Her efforts focus on stimulating innovative research and growing the Natural History Database and Biosample Repository projects. She completed her PhD at Vanderbilt University, studying TSC SEGA tumor development and neural stem cells under the guidance of Dr. Rebecca Ihrie. Prior to joining the TSC Alliance, Gabrielle served as Project Manager for the PREDICT (Pharmacogenomic Resource for Enhanced Decisions in Care and Treatment) program at Vanderbilt University Medical Center. Gabrielle has previous experience working with nonprofits including an internship at the TSC Alliance in 2017, where she participated in the March on Capitol Hill, contributed to the Patient-Focused Drug Development meeting, and wrote the research presentation summaries at the International TSC Research Conference. Additionally, Gabrielle served as the Research Director for the Thisbe and Noah Scott Foundation from 2016-2019. In her free time, Gabrielle enjoys listening to live music, spending time with her dog Willow, and working out.
Gail Saunders | Senior Associate Director, Community Programs
Gail joined the TSC 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.
Katie Smith | Director, Government & Global Affairs
Katie joined the TSC 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 TSC Alliance, Katie has implemented our Global Alliance program, which currently includes formal partnerships with Israel, Canada, Mexico, Thailand, India and Hungary.
Anne Wolfe | Senior Community Programs Manager
Anne Wolfe, a passionate rare disease advocate, joined the staff as Senior Community Programs Manager in December 2021. Anne has more than a decade of experience in creating events and programming for diverse audiences across patient advocacy, nonprofits, healthcare, and life sciences. In her role, Anne assists the Community Programs team in developing and implementing programs that build, grow and advance the TSC Alliance volunteer networks across the country with a focus on strengthening the peer-to-peer programs and Community Alliances that support the TSC community. She also serves as staff lead on the TSC Alliance’s Equity, Diversity & Inclusion Task Force and helps accelerate the organization’s efforts to develop and execute strategies that reach, support and connect underrepresented TSC communities. In addition, Anne leads all young adult- and adult-specific programming, including Regional Adult Coordinators and Future Leaders. She previously worked at Global Genes, leading the development of impactful programs to meet the evolving needs of rare disease patients, families, advocates, and research partners, and supporting the development of strategic partnerships and alliances. Anne has an honors degree in Peace & Justice Studies and International Relations from Tufts University. In her free time, she loves seeing local live music, watching documentaries, reading and cooking. She lives with her partner and two very cool cats in Boston, MA.