Board Members
Ben Kigobadi Founder- Interim Executive Director |
Leona Filis - Attorney Founder - Chief Compliance Officer |
Mazi Keyghobadi Founder - Executive VP of Special Initiatives |
Shirin Nouraein Board Member |
Tushar Tangsali Board Member |
Yasmin Pavri Board Member |
Ben Kigobadi
Founder- Interim Executive Director
Ben Kigobadi is a visionary leader with nonprofit experience and business development expertise, passionate about impacting lives through research, technology, and innovation. Consciousness is his north star, and serving humankind is his life purpose.
He founded a few startups and worked for Fortune 100 companies. In the last five years, Ben has worked for two nonprofit organizations, Region 4 Education Service Center and Money Management International.
When Ben learned there were breakthroughs in finding a cure for Muscular Dystrophy Disorder, he joined his devastated yet determined brother Mazi in "Hope for Luka." to fight this rare disease.
His mission is to build an organization and initiatives that support finding and funding world-class research initiatives and clinical trials that are making a breakthrough in curing Muscular Dystrophy Disorder and creating hope for patients with this horrible disease, including his nephew Lukian to have a normal life.
Contact Ben Kigobadi: ben.kigobadi@hopeforluka.org
Leona E. Filis
Founder - Chief Compliance Officer
Inspired by her thirteen-year-old son Jonathan, Leona E. Filis has built up her law firm practice with a focus on helping families with children with special needs.
Leona grew up spending much of her youth in her family-owned Greek restaurants where she first began her volunteer work with her parents by feeding the homeless in the Houston ship channel area. Throughout high school, Leona continued her community volunteer work on various projects as an active member in a dozen student civic organizations.
Her personal life changed in 2010 when she received the diagnosis confirming her belief that her son, Jonathan, was on the Autism Spectrum. As a parent and a lawyer, Leona soon realized that like herself, many special needs parents are overwhelmed and uninformed regarding their legal rights. As a result, Leona took on the challenge of helping, guiding, and educating families of children with special needs by providing free resources, including in-person seminars and videos.
Leona and her staff work with over twenty Houston-area charities and parent groups to provide special needs families with actionable information concerning benefits such as Interest Lists for Medicaid Waiver Programs and SSI.
Additionally, Leona provides information and services concerning Estate Planning, Supplemental Needs Trusts, assisting disabled children to transition into adulthood and Guardianship. In addition to the quarterly e-newsletters to her clients, Leona has a publication – “8 Steps to Consider When Raising a Child with Special Needs” and an award-winning article “Utilizing Section 504, IDEA, and Special Education”, The Houston Lawyer, January/February 2018.
Leona serves on advisory boards for Houston non-profits: S.A.F.E. Diversity Communities, Café Azul (Houston), and Friends of Down Syndrome. Every month, Leona hosts S.A.F.E. Diversity Communities’ Outreach events and co-hosts with Mrs. Thelma Scott the Embracing Diversity Radio Show.
Contact Leona Filis: leona.filis@hopeforluka.org
Maziyar "Mazi" Keyghobadi
Founder - Executive VP of Special Initiatives
Mazi is a dedicated father to a son with Duchenne Muscular Dystrophy and a conscious human being. Influencers; Eckhart Tolle, Alan Watts.
With limited resources around Muscular Dystrophy, Mazi has dedicated his life to a search for possible research and pre-clinical studies to cure or slow down the progression of Muscular Dystrophy for his son and any other child that will come on board while the window of opportunity is still open.
After three years of an extensive search, he was able to connect with researchers that are active in pre-clinical research studies for Muscular Dystrophy. He contacted and onboarded two renowned scientists: Dr. Dongsheng Duan of the University of Missouri and Dr. Annemieke Aartsma-Rus of the Department of Human Genetics of the Leiden University Medical Center in the Netherlands. Dr. Duan and Dr. Aartsma-Rus are considered to be two of the best research scientists in the field of genetics in Muscular Dystrophy.
Mazi is on a mission to do anything in his power today to cure his son and create a path forward for other children so he can live with himself in the future, knowing he tried his best.
Contact Maziyar "Mazi" Keyghobadi: mazi.keyghobadi@hopeforluka.org
Shiring Nouraein
Shirin Nouraein is a second year PhD student at Rice university, specializing in System Synthetic Physical Biology. Shirin is an experienced biomedical engineer in gene/cell therapy, neural engineering, gene delivery, and Gene editing. She has five-plus years of hands-on experience in number of research projects, both on Gene as well as stem cell therapy. Her recent paper was published named “Acoustically Targeted Noninvasive Gene Therapy in Large Brain Regions”. Her research utilizes the use of ultrasound to deliver the designed gene and CRISPR-CAS9 to the large region of the brain, non-invasively as a therapeutic treatment. Shirin also happens to be the wife of Mazi Keyghobadi’s childhood friend, Kasra Arianfar, and together, Shirin and Kasra have made, and continue to make significant contributions so Lukian and other children like Lukian can become free of this devastating genetic disease.
Tushar Tangsali
Tushar’s sons are diagnosed with ultra-rare mutations in the early part of the dystrophin gene, and hence are not eligible for exon-skipping strategies or mini / micro dystrophin gene therapies. Tushar follows research and is passionate about helping other DMD families with applicable therapies. Tushar attends all Duchenne conferences, pharmaceutical conventions, and FDA CBER sessions, and is trying to streamline the eligibility criteria for trials and the ensuing enrollment process to address the unmet needs of all segments of the DMD population.
Yasmin Pavri
Yasmin Pavri is a dedicated professional with a passion for positively impacting causes she believes in.
As a long-standing member of the Zoroastrian Association of Houston (ZAH) for 40 years, she has served on the executive committee of ZAH and was a liaison to the Federation of Zoroastrian Associations of North America (FEZANA). She was on the Executive Committee of the first World Zoroastrian Congress held in the United States in 2000.
Yasmin has a Master’s in Math/Statistics and took the exams to become a Fellow of the Society of Actuaries. She worked as a health actuary at Milliman, an actuarial consulting firm, for 19 years. Her expertise included financial projections, strategic planning, and decision-making for several health care organizations. As a consultant, she learnt good organizational and communicating skills and hopes to bring those skills to the Board.
Before becoming an actuary, Yasmin worked as a high school math teacher for 11 years where communication and public speaking were necessary skills for her day-to-day routine.
She is excited to leverage her skills as a valuable member of the Hope for Luka Board, contributing to decisions and initiatives that drive the organization’s mission forward.
Support our Cause!
Your donations will enable us to fund scientists to perform independent studies and pre-clinical trials for children with Muscular Dystrophy!
Once donation is made, you will receive an email containing a receipt that can be presented to IRS for tax deduction purposes.
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