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.

UT Southwestern

The Research Team

Berge A. Minassian, MD

Berge A. Minassian, MDBerge 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, PhDSteven 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

Gina HannGina 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

Meagan Pollock, PhDMeagan Pollock is the Director of Professional Development for the National Alliance for Partnerships in Equity. In this role, Meagan leads a national team of equity professionals that build educators’ capacity to implement effective solutions for increasing student access, educational equity and workforce diversity. 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.

Roy D. Elterman, MD

Roy Elterman, MDDr. Roy Elterman is President of the Pediatric Epilepsy Research Foundation. He is Board Certified in Neurology with special qualification in child neurology by the American Board of Psychiatry and Neurology. His pediatric training was at the University of California, San Francisco, adult neurology training at the University of Miami/Jackson Memorial Hospital and pediatric neurology fellowship at the UT Health Science Center in San Antonio. He was the chief of pediatric neurology at USAF Wilford Hall Medical Center, San Antonio from 1979-1981. He engaged in the clinical practice of child neurology at Dallas Pediatric Neurology Associates for thirty years, retiring in 2011. During that time he was a founding member and active participant of the Neuro-Oncology Clinic at Children’s Medical Center-Dallas. He has been active in the Child Neurology Society chairing both the Practice Committee and Legislative Affairs Committee and serving the on the Training Committee and Nominating Committee. He is a founding member of the Child Neurology Foundation and served as Chairman of the Capital Acquisition Committee. Dr. Elterman has been an examiner for the Part II examination of the American Board of Psychiatry and Neurology and was on the committee to develop the Re-Certification Examination. He is a Fellow of the American Academy of Neurology and a member of both the Child Neurology Society and the American Epilepsy Society. His research interests and publications have been in pediatric neuro-oncology and pediatric epilepsy. He has been active in the development of several recently marketed antiepilepsy medications and played a key role in making vigabatrin available for the treatment of infantile spasms in the United States.

Kevin Calandro, CFP®

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.

 

SaveSave