Our Team

It takes everyone working together to provide Hope for FRRS1L kids and families. We are thankful to all the volunteers and partners that support this cause.

STAFF POSITIONS (VOLUNTEER ONLY)

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Co-President

  • Viviana is one of the founding mothers of Finding Hope for FRRS1L organization. She currently serves on the board, and as Co-President. She is married and the mother of three children, including two under the age of 15 months, and Arturo who has FRRS1L genetic disorder. In addition to being a full time mom and care giver, she is putting her combined 10 years of experience in Finance and start-up Operations to work to build and expand Finding Hope for FRRS1L. Her dream is to find a cure for FRRS1L and bring hope to families around the world who have children who suffer from this heartbreaking disorder.

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Co-President

  • Chrissy is one of the founding mothers of Finding Hope for FRRS1L nonprofit. She currently serves on the board, and as Co-President. She is married with 3 children, one of whom is Everly that has FRRS1L genetic disorder. When not busy with her first job of being a mom and caregiver, Chrissy uses her 13 years of professional communications and marketing experience to help support the work for Finding Hope for FRRS1L nonprofit.

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Philanthropy Manager

  • Lara Silvas has spent the entirety of her career supporting social impact organizations, first being placed as a Teach for America Corps Member in New York City directly out of college. She spent the first eleven years of her career working within school systems and youth-based non-profit organizations as a teacher, program leader and recruitment lead in under-resourced communities within NYC. At the same time, Lara also explored another interest of hers, and received a Masters Degree in Global Public Health from NYU. Since 2017,  Lara has consulted full time for schools and mission-driven organizations supporting them in maximizing their outcomes through talent strategy. 

    As a long-time friend of Viviana, when Lara learned about FRRS1L and how devestating it is for the children and their families, she knew she wanted to help get lifesaving treatment funded. In 2024, Lara first partnered with Finding Hope for FRRS1L as the first FRRS1L Ambassador to support the goal of raising $1.1 million. Through events, including silent auctions, leveraging relationships to maximize individual giving, and corporate matching, Lara advocated to raise $40,000 + within her community and supported Finding Hope in their larger goal. 

Board of Directors

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    Viviana

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    Arturo

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    Chrissy

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    Steve

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    Matt

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    Lindsay

  • Viviana is a Co-Founder of Finding Hope for FRRS1L organization. She currently serves on the board, and as President. She is married and the mother of three children, including two under the age of 15 months, and Arturo who has FRRS1L genetic disorder. In addition to being a full time mom and care giver, she is putting her combined 10 years of experience in Finance and start-up Operations to work to build and expand Finding Hope for FRRS1L. Her dream is to find a cure for FRRS1L and bring hope to families around the world who have children who suffer from this heartbreaking disorder.

  • Bio coming soon..

  • Chrissy is a Co-Founder of Finding Hope for FRRS1L nonprofit. She currently serves on the board, and as Vice President. She is married with 3 children, one of whom is Everly that has FRRS1L genetic disorder. When not busy with her first job of being a mom and caregiver, Chrissy uses her 13 years of professional communications experience to help support the work for Finding Hope for FRRS1L nonprofit.

  • Steve is a parent of a Frizzle child, with 23 years of experience in business project management and development.

  • As President and CFO of Eagle Security Group, Matt leads with a focus on integrity, operational excellence, and client-centered service. With 30 years of experience spanning government contracting, financial consulting, and international business, he brings a diverse background to delivering risk management and security solutions for both federal and private sector clients. His career began in global marketing management, followed by roles in commercial lending and financial services with a Big 4 Accounting firm. These experiences shaped his approach to leadership—grounded in strategy, transparency, and results. He holds a Master’s in Accounting and a B.A. in Computer Science, and is passionate about building strong teams, trusted partnerships, and sustainable business growth. Matt is a close and long time friend of Steve and Chrissy, who helped found Finding Hope for FRRS1L. Over the years, he has shared in their family’s journey—especially their love and hope for their daughter, Everly. Deeply moved by their story, he is committed to supporting Finding Hope for FRRS1L’s mission to find a cure for all FRRS1L patients around the world.

  • Lindsay is an entrepreneur, investor, and technology operator. Lindsay is currently the SVP of Product and Angi, the country's largest home services marketplace, as well as a General Partner at Coalition Operators, a venture capital firm that invests in early stage consumer, b2b, and healthcare software companies. Earlier in her career she was an investor at Google Ventures (Google's venture firm), the CEO and founder of Umbrella, a home services marketplace acquired by Angi/IAC, and led the incubation of Cityblock Health, a value-based healthcare provider for Medicaid and dually eligible recipients that now serves over 100,000 members. Finding Hope for FRRS1L is an organization dear to her heart via the experience of her closest friend, Viviana, whose oldest son age was diagnosed at age 3. Lindsay is honored to be part of an organization driving forward life-changing research for children with the disease.  She lives in Washington DC with her husband and daughter. 

FRRS1L Advisors

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Neil Hackett

  • Neil Hackett is a Professor of Research in Genetic Medicine at Weill-Cornell Medical College and has worked in preclinical and clinical gene therapy for over 25 years. In addition to co-authoring over 100 academic publications, he holds several patents including one for a gene therapy drug that is now in late phase clinical assessment. He has helped several rare disease foundations through the long path from laboratory studies to clinical assessment and is fully committed to doing the same for the FRRS1L team.

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Dr. Xilma Ortiz-Gonzalez

  • Dr. Xilma Ortiz-Gonzalez is a physician-scientist specializing in pediatric neurogenetics.

    She trained as a child neurologist at CHOP and her clinical practice focuses on the diagnosis and management of ultra-rare disorders. She has contributed to establishing, functionally validating, and/or expanding the phenotypic characterization of over 25 pediatric neurodevelopmental disorders. Dr Ortiz-Gonzalez was born and raised in Puerto Rico, hence her particular interest in rare disorders affecting underserved populations. She contributed to characterizing two rare neurodevelopmental disorders linked to a genetic founder effect in children of Puerto Rican (“Boricua”) ancestry: TBCK Encephaloneuronopathy [TBCKE] and FRRS1L Epileptic Encephalopathy. Her research laboratory focuses on unraveling the molecular mechanisms that underlie neurodegeneration. Her laboratory uses patient-derived iPSC stem cells with the ultimate goal of identifying potential therapeutic strategies. She is the recipient of numerous awards, including the RWJ Harold Amos Faculty Development Award, the Burroughs Wellcome Fund CAMS Award, the Al Dia Top Doctor Award, the ANA Emerging Scholar Award & the Philadelphia Magazine Top Doctor Award. She is a proud Boricua and mother of 2 young children.

    https://www.med.upenn.edu/oglab/

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Ryan Zettle

  • Ryan joins the team with 12 years of experience in the regulatory field both in the government and the private sector.  He began his regulatory career serving 5 years as a Regulatory Project Manager within the US Food and Drug Administration in the Office of Product Quality. He has spent the last 7 years as the Head of Regulatory Submissions at Parexel International, a leading global Contract Research Organization's (CRO).  He is excited to utilize his passion for public health and regulatory experience to make a difference in the lives of FRRS1L children.

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Maura Carroll

  • Coming soon…

PARTNERS

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FRRS1L Manufacturing

Finding Hope for FRRS1L partnered with … COMING SOON.

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FRRS1L Toxicology Testing

Finding Hope for FRRS1L partnered with Northern Bio Research for all toxicology testing for FRRS1L gene therapy treatment development. Full press release here.

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FRRS1L Pre-Clinical Research

Finding Hope for FRRS1L funded pre-clinical research at the University of Texas Southwestern for FRRS1L mouse modeling and gene therapy studies.

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  • Berge A. Minassian, M.D., is a Professor in the Departments of Pediatrics and Neurology at UT Southwestern Medical Center. Dr. Minassian is a pediatric neurologist whose clinical specialties are epilepsy, neurodegenerative diseases, and neurogenetic conditions. The Chief of Child Neurology at UT Southwestern, he also leads the Neurosciences Center at Children’s Health in Dallas. He serves on the faculty of the Children's Medical Center Research Institute at UT Southwestern, as well. Dr. Minassian has been active in neurogenetics research for his entire career. Two of his primary interests have been Lafora disease, for which his lab discovered the genes, and adult polyglucosan body disease. He has published more than 120 scholarly articles and authored or contributed to 10 books. Dr. Minassian is a Fellow (Neurology) of the Royal College of Physicians and Surgeons of Canada and a founding member of the American Academy of Neurology’s Neurogenetics Section. Prior to joining the UT Southwestern faculty in 2016, he was a Professor of Neurology at the University of Toronto, a pediatric neurologist at Toronto’s Hospital for Sick Children, and a senior scientist in genetics and genome biology at the Hospital for Sick Children Research Institute. Dr. Minassian earned his medical degree at McGill University Faculty of Medicine and performed a residency in adult neurology at the Veterans Administration West Los Angeles Medical Center. He then completed a clinical fellowship in pediatric neurology and epileptology, as well as postdoctoral research fellowships in both molecular genetics and molecular neurogenetics at the University of Toronto’s Hospital for Sick Children. Dr. Minassian’s many professional honors include the Jacob's Ladder 2014 Norman Saunders International Research Prize for Outstanding Scientist, the American Academy of Neurology 2007 Dreifuss-Penry Epilepsy Award, the Canadian Paediatric Society 2008 Sanofi Pasteur Research Award, and the American Epilepsy Society 1996 Young Investigator Award.


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  • Ms. Sheibani is currently a postdoctoral researcher in Dr. Minassian’s lab. Originally trained as an MD in Iran, she developed a growing passion for neurosciences during her medical studies and clinical practice. This interest led her to pursue a master’s degree in neuroscience in Germany, where she became fascinated by the potential of gene replacement in repairing brain circuits. Following this passion, Ms. Sheibani embarked on a path that eventually led her to the exciting opportunity to work as a postdoc in Dr. Minassian's lab, aimed at understanding and finding treatments for rare neurogenetic disorders. Here she is specifically focused on the pre-clinical aspects of the FRRS1L gene-therapy project. She is thrilled to be a part of “Finding Hope for FRRS1L” and really looks forward to the potential impacts it could bring for patients in the future.

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Video Work

At Story Path we love seeing brands get the attention they deserve. Every brand has a powerful story nested at its core and we love drawing out that story and encapsulating it into high ROI content creation that helps elevate brand awareness, build customer/client retention and scale sales volume. We do this through highly entertaining video and photo content creation, DIY marketing coaching, and by partnering with trusted white label solutions to make sure your brand gets the attention and traction it deserves. Your story matters, and we want to tell it to the world!

Finding Hope for FRRS1L has partnered with Story Path to help visually tell the story of FRRS1L kids.