As of yet, there is no cure for Batten Disease. However, we have partnered with a team of scientists and doctors at UTSW and Children’s in Dallas, who have made significant progress in development that will enable a potential trial for Joseph’s form of Batten and other neurodegenerative diseases affecting children. We have committed to serving the vision of this team’s work toward realizing gene therapy trials in Dallas, starting with Joseph’s form of Batten.
The Research Team
Berge A. Minassian, MD
Berge A. Minassian, MD, is a Professor in the Department of Pediatrics at UT Southwestern Medical Center. He is a pediatric neurologist whose clinical specialties are epilepsy, neurodegenerative diseases, and neurogenetic conditions. The Chief of Pediatric 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.
“One of the main reasons I came to UT Southwestern was to develop a gene therapy program aimed at curing various types of epilepsy,” he says. “I really want to help make a fundamental difference in families’ lives by altogether eliminating the problem in as many cases as we can.”
We are pleased to be working to help fund the work of Dr. Minassian and his vision of gene therapy in Dallas, which will give Joseph an opportunity to realize gene therapy for his form of Batten disease.
Steven Gray, PhD
Steven Gray, PhD, leads a research laboratory at the UNC School of Medicine Gene Therapy Center. Dr. Gray’s primary research focus is to develop adeno-associated virus (AAV) gene transfer vector systems, for clinically-relevant global gene transfer to the central and peripheral nervous system. The team at Batten Hope met Dr. Gray through work that he has done specifically with Joseph’s form of Batten, and it is because of his team’s work that the opportunity for a clinical trial is available.
The Batten Hope Fund of Dallas Foundation
The Dallas Foundation serves as a leader, catalyst and resource for philanthropy by providing donors with flexible means of making gifts and bequests, the income from which primarily supports the charitable causes of the city and county of Dallas. Batten Hope is a Fund of the Dallas Foundation, allowing charitable donations to be received under their 501(c)(3) status.
Gina Hann, Batten Hope Founder, President and Treasurer
Gina Hann is a Marketing Manager for Texas Instruments, holding an BSEE and MBA. She founded Batten Hope because she believes that every parent given a rare disease diagnosis like her son Joseph, deserves the opportunity to work toward an outcome for their child. Inspired by the vision of Dr. Minassian and his commitment to make gene therapy for rare diseases more accessible, Gina and her family hope to realize a clinical trial for Joseph, and to help others learn from their process in working toward this goal.
Meagan Pollock, PhD, Vice President and Secretary
Dr. Meagan Pollock is the Executive Director of Design Connect Create, a nonprofit organization that empowers young women to be successful in Science, Technology, Engineering and Mathematics (STEM) courses in order to close the gender gap in STEM careers. In addition, Meagan is CEO of 7E Ventures, a firm that provides consulting and development services related to engineering, education and equity, and houses two tech start-ups. Before turning her focus on the intersection of education and equity, Meagan worked as an engineer for Texas Instruments. Meagan was a National Science Foundation Graduate Research Fellow, and she holds a PhD in engineering education from Purdue University, a MS in electrical engineering from Texas Tech University, and a BS in computer science from Texas Woman’s University. As an engineer turned educator, Meagan is focused on engineering equity into education and the workforce.
Kevin Calandro, CFP®
Chartered Advisor in Philanthropy® Merrill Lynch
A respected member of the financial services industry since 1985, Kevin joined his brother, John, in 2002 and guides wealthy families, trusts, corporations, foundations and successful entrepreneurs with advanced asset management strategies. Previously, Kevin worked with Lehman Brothers and PaineWebber, where he utilized an institutional platform to customize investment solutions for mid-sized institutions and high-net-worth individuals. Kevin has lectured extensively in the Dallas area on utilizing the application of the principles of Modern Portfolio Theory to determine appropriate asset allocation and separately on incorporating technical analysis into an investment program.
Kevin is a Certified Financial PlannerTM professional. In 2017 Kevin also achieved the designation of Chartered Advisor in Philanthropy ® (CAP ®). The CAP ® curriculum consisted of three graduate level courses that provided knowledge and tools so that Kevin could better help clients articulate their highest aspirations for self, family, and society.
Kevin currently serves on the Parkland Foundation Planned Giving Council and the Foundation for Batten Hope Project Committee.
Ameet is a semiconductor chip designer and the co-founder of Leanscience.fit – a customized lifestyle program that emphasizes the science behind the human physiology and achieving total health goals. An avid researcher of the science of nutrition and metabolism, Ameet works to simplify the complex and apply it for life changing results. Ameet is a graduate from BITS – Pilani.
Joseph F. Coniglio has wide-ranging experience in the area of health care law and complex business litigation. He represents hospitals, physicians, and other related health care entities in litigation and transactional matters. He also provides service on a national basis to privately held and publically traded companies related to corporate entity issues and health care regulatory matters. Joe advises health care clients on operational matters, liability exposure of corporate entities, federal and state health care regulatory compliance involving complex fraud issues and health care reimbursement disputes, as well as professional liability and risk management. He also represents health care providers before their respective state boards in grievance and disciplinary proceedings.