Leadership

BINA MANIAR SHAH

Founder, President and CEO

In 2018, Bina founded Project 8p Foundation to accelerate research with the goal of treatment for chromosome 8p heroes like her daughter Karina. Since then, she has fully committed herself to the advancement of clinical and research understanding of rare disorders, in particular neurodevelopmental chromosomal disorders such as the 8p rearrangements.  Shifting perspectives from disease specific efforts to innovative approaches that are gene-agnostic and cross disorder is a long term scalable vision of hers. As a result, she is the founding partner of the Commission on Novel Technologies for Neurodevelopmental Copy Number Variants (CNVs).

Her family resides in New York City where Bina earned her B.S. in Finance & Marketing from NYU Stern Business School as well as her M.B.A. from Columbia University. She has over 15 years of experience in finance in the areas of mergers and acquisitions, private and public equity investing, real estate development, and property management.

Bina leverages her business and entrepreneurial background and network to build bridges to improve efficiencies in a Collaborative Impact model for Team Science.

Dr. Brett Bell

Chief Operating Officer

Dr. Brett Bell takes a vision and makes it reality through sound strategy development. He objectively and intuitively sees the threads of opportunity that wind through an organization, brings them together into a coherent whole, helps others extend their thinking, and drives material business advantage.

Brett was named Chief Operating Officer of Project 8p in May 2021. In this capacity, Dr. Bell will have both internal and external facing responsibilities, ranging from client and operational management to human capital oversight.  In this role, Brett will partner closely with Bina Shah, Project 8p Founder and CEO, to chart Project 8p’s future growth and strategic response to market opportunities.

Dr. Bell brings more than 15 years of experience helping organizations maximize results through  people.   Brett looks at business performance through the lens of talent optimization, communication, leadership, and strategic alignment—the four factors enabling organizations of any size to grow and effectively execute strategic initiatives. Brett brings to bear a strong track record of organizational leadership and operational execution and fostering a corporate culture of workforce engagement and professional development.  He has worked with directors, senior executives and CEOs of Fortune 500 and other organizations in the technology, biotech, healthcare, legal, retail, hospitality, entertainment, and creative sectors.

Brett is distinguished by his ability to identify, optimize, and develop talent. Throughout his career, he has helped clients recognize their unique capabilities and position themselves as “A” players by addressing career strategy, leadership development, professional positioning, and visibility. Brett has a contagious enthusiasm and passionate belief in people that inspires them to become prouder, stronger, and more valuable contributors to their organizations. Throughout his professional career he has also led innovative initiatives to build top-performing organizations with management “bench strength” and staying power.

Brett holds PsyD from the Widener University, MA in Psychology from Widener University, and a BA in Psychology from Temple University.

MEHUL SHAH

Treasurer, Secretary

As a father to an 8p hero, Mehul Shah is passionate about finding treatment in an unprecedented time of genetic advancements. While this mission is close to his heart, he knows there is immense value in the science towards helping others going through similar circumstances.  His support of the research program is with the belief that Project 8p Foundation can significantly advance the path to treatment.

Mehul Shah is currently the Head of Agency MBS at a major investment bank. He has over 20 years of finance experience in trading and structuring securitized products. Mehul has been accredited for his perspective on market trends and research.

Mehul is born and raised in New York City and is a proud Eagle Scout of the Boy Scouts of America.  He received a Bachelor of Science degree from the Leonard N. Stern School of Business at New York University where he doubled majored in Finance & Information Systems. He attended the reputable Stuyvesant High School.

MAULIN P. SHAH

Maulin is the proud uncle of Karina Shah, an 8p Hero, and was motivated to join the board after witnessing over 60 families from all over the world come together at the first Project 8p conference in NYC. He realized there the significance of the work being conducted and the importance of creating an 8p community with a shared mission.

Maulin was most recently a Portfolio Manager at Citadel LLC, where he managed a Global Event Driven & Risk Arbitrage group. His previous positions include Managing Director & Global Investment Committee member at Perry Capital and Portfolio Manager, Head of Event Driven Strategy at Shumway Capital. Maulin also served on the board of SCO Family of Services which helps 60,000 vulnerable New Yorkers each year.

He received a Bachelor of Science degree from the Leonard N. Stern School of Business at New York University where he doubled majored in Finance & Information Systems.

SHANNON CLARKE

Shannon’s professional and volunteer work has focused on supporting children and families in various roles for the last 20 years with a focus on biomedical research for the last 10 years. She considers the opportunity to serve as a Project 8p board member a privilege, recognizing the strength of the Project 8p heroes and their families to be inspiring. Her expertise and background will support the Project 8p community by identifying opportunities to empower families and optimize research initiatives.

Shannon is the Assistant Director of Strategy and Operations for the Division of Integrative Genomics in the Department of Biostatistics & Bioinformatics at Duke University. Her primary responsibilities include serving as the project manager for an NIH funded Center of Excellence in Genomic Sciences as well as supporting research efforts for IG faculty and developing opportunities for collaboration across disciplines. The research projects span genomic and computational areas with a focus on gene regulation including clinical applications in ultra-rare, rare, and common human disease.

Most importantly, Shannon is a mother to two boys and a wife, daughter, sister, and friend. She firmly believes in the strength of family and acknowledges that with the support of family and community, anything is possible.

Dr. Thomas Peterson

Dr. Thomas Peterson has been anxious to continue his quest for helping others through betterment of standard care treatment as well as novel approaches to otherwise unknown treatment alternatives. That is precisely why joining Project 8p was so important to him. Project 8p is an organization that is leading the charge on a rare genetic disorder that most know very little about and one that needs dedicated team and board members to advance the understanding and treatment options for chromosome 8p disorders. He has worked in healthcare for over 15 years and has served in many capacities, all of which with the same goal in mind, serving others. He has achieved much acknowledgements and accolades for his successes in healthcare from his time working in Level 1 Trauma Centers to his time working with patients in research capacities where is true calling came to fruition.  Research not only gives Dr. Peterson the chance to advance the understanding of research approaches but also gives him the greatest opportunity to teach others about research processes.

As a PhD in Public Health Policy and a Minor in Epidemiology, graduating in the top 5% of his class, he has worked in several research-focused institutions writing his own clinical trial guided towards palliative care treatments in solid tumors as well as with major CRO’s in advancing rare disease and oncology understanding as a Senior Research Associate where he continues to work currently. In tandem, he is serving his local community by utilizing his certifications from Columbia University in Virology and Infectious Disease as a Medical Reserve Corps Member at the Coronavirus Vaccination Centers of Illinois. Further to note, he is actively involved in several board positions that focus in patient advocacy. His key areas of research include oncology, hematology, pediatrics and rare diseases in genetics.

DR. EHSAN YAZDI

Medical & Scientific Advisor

Dr. Yazdi is eager to apply his expertise to Project 8p’s mission and provide strategic oversight on all research programs to help our 8p heroes. He is also is co-Founder and Chief Executive Officer of NomoCan Pharmaceuticals, a NYC-based oncology drug discovery & development company with assets in development for multiple cancer indications. As a geneticist and molecular biologist, he has 15 years of experience in the field of cancer biomarker discovery and therapeutics. Prior to starting NomoCan, he was an Assistant Professor and translational research director at the Division of Gynecologic Oncology, State University of New York, Downstate Medical Center. He has several issued and patents related to anti-cancer peptides and monoclonal antibodies. He is co-inventor of several anti-cancer peptides which are at various stages of development by other companies. His research has been recognized by various awards including “Outstanding Clinical Scholar” award from the AACR/GlaxoSmithKline as well as by the Robert Furchgott Society (Nobel Prize in Medicine, ’98). Dr. Yazdi received his Ph.D. in Cellular and Molecular Biology and M.P.H. in Health Policy and Management from SUNY Health Science Center- NY and his M.Sc. in Applied Genetics from University of Birmingham and Imperial College of London- U.K. His key areas of research include cancer genetics, molecular biology, and biomarker & therapeutic discovery and development.

Will Norris

Being on the PLB allows me to directly contribute to advancing the mission of the organization. Bina has done a TON of work already that we have all benefited from immensely. PLB provides a venue for the rest of us to help spread some of this work & to scale up our collective efforts to improve the lives of our kids/loved ones impacted by 8P.I am both chair of the Research Committee (ResCom) and a member of the PLB. One of the first things that the ResCom is doing is cataloging our research objectives and prioritizing specific efforts. This will enable us to align resources against our most important needs.

I am a professor in the field of international affairs with previous experience in finance (hedge funds & private equity) and management consulting. I have also served on some non-profit and educational boards. Before kids, I used to have hobbies… I still do like to go fishing & have enjoyed getting the kids hooked on it too as they have gotten older.

Kaiti Syverson

Kaiti joined Project 8p in 2019, taking on the role of Family Support Chair. Her family lives in Alaska, where she also earned a B.A. in Elementary Education. Kaiti is the proud mom of Chloe, an 8p hero. She hopes to use her position at Project8p to unite families, provide invaluable resources, and continue growing the 8p community.

AMBER HOWLAND

Amber Howland lives in Reno, NV with her husband and two children. Her daughter, Athena, was born in 2015 with 8p Inverted Deletion/Duplication.  After learning about Project 8p and its mission to help all of the #8phereos, Amber and her husband Edward volunteered to use their expertise to contribute.  Amber has a BA in Communications and Geography and owns digital agency, Dragonfly Media.  Through Dragonfly Media, Amber and her team support Project 8p as Awareness Chair.  This includes management on the Project 8p website, social media, advertising and marketing.  In addition, utilizing Athena’s blessings, they raise donations through the sale of Project 8p jewelry and charms.

MARICARMEN LUHRSEN

Maricarmen Luhrsen is a mother of 4 children and a registered nurse from Los Angeles, California.  Her youngest son was diagnosed with 8p Inversion Duplication Deletion Syndrome at age 2 1/2 after a long journey of communicating her concerns about his developmental delays to his pediatrician and being assured he was “fine”. With persistence she was able to find answers and begin to focus her energy on supporting her son’s physical and developmental growth through therapy.  She was also able to find Project 8p to support her own mental and emotional health.  Project 8p families have served as an important part of her families journey through celebrating our 8p heroes milestones and supporting each other through emotional times.

Maricarmen holds a Masters of Science in Nursing from Norwich University and has over 20 years of nursing experience.  Her clinical background includes 12 years in Maternal Child Health.  Her current position as a Nursing Director has included promoting Nursing Research, Professional Development and creating programs to enhance the patient and family experience in the hospital setting.

Why serving on the PLB is important to me?

Serving on the Project 8p Parent Leadership Board helps me feel like I am able to collaborate with other 8p families to advance the mission of the Project 8p Foundation. Our collective efforts can do more and serve more than any one of us can alone.  The journey of a family with a child with a rare disease can be lonely and scary.  Project 8p is working hard to improve the lives of our children, to better understand chromosome 8 disorders and to develop education and treatment for generations to come.  I am proud to say, I am a part of this group that will impact the lives of many.

BRAD SWAIL

Brad Swail lives in Austin, TX, with his wife, Laura, and their three children, Leif, Lachlan, and Wilhelmina.  Lachlan, born in July, 2017, was quickly diagnosed with 8p Inverted Deletion/Duplication, and ever since both Brad and Laura have strived for a better future for not only Lachlan, but all diagnosed with 8p and other rare disorders. Brad travels as often as he can to medical conferences to better understand where the science is and make valuable acquaintances in the industry.

SHELDON SENEK

Sheldon Senek is a proud dad of two children, Sheldon III and Josephine (an 8p Hero), and husband of Krysta. In his professional life, he is president of Eagles Talent, a speakers and entertainment bureau and is very active in the industry, having served as a board member and president of IASB (International Association of Speakers Bureaus). In addition, Sheldon spent over a decade working in the theatre industry at Dramatists Play Service, as well as being a published/produced playwright. He also moonlights in a few bands, and composes/records music for podcasts (most recent projects include Spotify’s “An Oral History of the Office”, and University of Chicago’s “Pandemic Economics.”  He enjoys volunteering his time as an assistant Scoutmaster for Troop 2 in West Orange, NJ. Lastly … Sheldon is originally from Ohio and still roots for his Cleveland teams (which makes him fragile).

Sheldon LOVES being a part of Project 8p PLB. There is an amazing community of families who are going through a similar journey and this organization gives us an opportunity to share, learn, and bring awareness to our 8p heroes. Years ago, our 8p world seemed small and unknown, but Project 8p connected us to a new family filled with support, ideas, love, and a drive towards research — this has changed our mindset from feeling limited to the excitement of discovering what’s possible.