PROJECT - Key Persons
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.
Job Titles:
- Copy Editor for Several Sections
Job Titles:
- Founder & CEO / President of the Board of Directors
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.
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.
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.
Job Titles:
- 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.
Dr. Ethan Perlstein trained as a graduate student with Professor Stuart Schreiber at Harvard University in the Department of Molecular and Cell Biology and then as an independent postdoctoral fellow at the Lewis-Sigler Institute at Princeton University. In 2014, he founded Perlara PBC, the first personalized drug discovery platform partnering with families around the globe and BioPharma to cure diseases previously thought too rare to matter. Dr. Ethan Perlstein developed an approach to studying old drugs and discovering new drugs in model organisms called evolutionary pharmacology.
Ethan is also CEO of a joint venture between Perlara and a rare disease family called Maggie's Pearl, which will be launching a Phase 3 drug repurposing trial at Mayo Clinic in Q1 2022.
Ethan is an author on 19 peer-reviewed scholarly publications, including the discovery of a novel mechanism of action for the antidepressant Zoloft based on studies in yeast cells.
Dr. Sam Finlayson completed his PhD in quantitative biology under the direction of Isaac Kohane (Harvard) and Peter Szolovitz (MIT CSAIL). He is also co-founder and CSO of Team Hydro, a non-profit focused on hydrocephalus research whose grant recipients have developed several candidate therapeutics. He is currently a final year medical student at Harvard Medical School, as well as an independent scientific and machine learning consultant with experience working with tech and biotech startups as well as large pharmaceutical companies.
Job Titles:
- Assistant Professor
- Medical & Scientific Advisor
Dr. Scott Demarest is an assistant professor in the Department of Pediatrics, Division of Neurology and the Adult & Child Consortium for Health Outcomes Research and Delivery Science. He is board certified in Neurology with special qualification in Child Neurology as well as Epilepsy. His clinical practice and research focus on the evaluation and treatment of early-life genetic epilepsies. This includes clinical trials for novel therapies for epilepsy, conduct of natural history studies and the development of better outcome measures for early life epilepsies. He received a Bachelor of Science in biology from the University of Texas at Austin before going on to medical school at the University of Texas Health Science Center in San Antonio. He completed his residency in Pediatrics and child neurology at Children's National Health System in Washington, DC and his Epilepsy fellowship at Children's Hospital Colorado.
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.
Job Titles:
- Medical & Scientific Advisor / Precision Medicine Resource Leader - Irving Institute
Wendy Chung, M.D., Ph.D. is a clinical and molecular geneticist and the Kennedy Family Professor of Pediatrics and Medicine. She received her B.A. in biochemistry and economics from Cornell University, her M.D. from Cornell University Medical College, and her Ph.D. from The Rockefeller University in genetics. Dr. Chung directs NIH funded research programs in human genetics of birth defects including congenital diaphragmatic hernia, congenital heart disease, and esophageal atresia, autism, neurodevelopmental disorders, pulmonary hypertension, cardiomyopathy, obesity, diabetes, and breast cancer. She leads the Precision Medicine Resource in the Irving Institute at Columbia University. She has authored over 300 peer reviewed papers and 50 reviews and chapters in medical texts. She was the recipient of the American Academy of Pediatrics Young Investigator Award, the Medical Achievement Award from Bonei Olam, and the New York Academy Medal for Distinguished Contributions in Biomedical Science. Dr. Chung is renowned for her teaching and mentoring and received Columbia University's highest teaching award, the Presidential Award for Outstanding Teaching. She led the pilot newborn screening study of spinal muscular atrophy in NY that helped lead to nationwide adoption of this test in newborns. She was the original plaintiff in the Supreme Court case that overturned the ability to patent genes and served on the Institute of Medicine Committee on Genetic Testing. Dr. Chung enjoys the challenges of genetics as a rapidly changing field of medicine and strives to facilitate the integration of genetic medicine into all areas of health care in a medically, scientifically, and ethically sound, accessible, and cost effective manner.
Jahn Marie Surette is a C-level executive and consultant, who has served as executive leader for business and operations for more than 25 years in the healthcare, insurance and private equity industries, at such companies as Cigna, Travelers, The Hartford and Third Bridge, LTD. She is a global leader and has led multi-year strategy development,
expense management initiatives, sales and revenue growth operations across multiple disciplines, including customer service, account management procurement, real estate and research services. She has overseen corporate social responsibility and worked in tandem with human resources talent development and change management at large and mid-cap companies.
Jahn Marie is on the Advisory Board of The Hang Out Spot, a for-profit business providing clinical-based and data driven strategies to improve the social skills of children. She is also on the board of Forge City Works a nonprofit organization providing access to food through their farmers market and job skills training in the culinary field with a focus on opportunity youth and adults with barriers to employment.
Jahn Marie's general management background allows her to apply her diverse professional experiences to a multitude of industries and business scenarios with no "one playbook." Her passion is building and helping clients execute purpose driven strategic visions that generate sustainable growth and profitability.
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.
Kassi Magruder lives in Missoula, Montana with her husband, Ian, and her daughter, Daphne. Daphne was born on Valentine's Day, 2017 with 8p Inv Dup Del Syndrome. Being in a family of outdoor enthusiasts, Kassi spends her time skiing, hiking, mountain biking and camping and is becoming a self-described adaptive recreation expert. She works for an international travel company and is passionate about showing the world to her daughter. Kassi is proud to serve on the Patient Leadership Board and excited to support other families with 8p disorders.
Kevin Hickey lives in Fort Worth, TX, with his wife, Jessica, and their two children Claire and Everett. Claire , born on Earth Day in April of 2017 was diagnosed in June 2018 with Inverted Deletion/Duplication of Chromosome 8p. From the early days of the news Kevin and Jessica have researched and been heavily involved in activities around Project 8p to help Claire and all others with her diagnosis live life to the fullest potential. Kevin works in Cybersecurity software sales and enjoys connecting with other families to help raise awareness and better understand the science and future care for all of those affected by rare disorders. In his spare time, he enjoys traveling to new places, hacking at golf, barbequing, and of course laughing with Claire and Everett!
Job Titles:
- Portfolio Manager of His Own Fund East 53 Capital
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 is currently a Portfolio Manager of his own fund East 53 Capital. Prior to that, he was 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. He also serves on the Board of Bronx High School of Science Foundation, where he is an alumni.
Job Titles:
- Secretary
- Treasurer
- Senior Portfolio Manager at Verition Fund Management
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 Senior Portfolio Manager at Verition Fund Management. Prior to that, he was Head of Agency Mortgage Backed Securities 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.
Rose-Anne Partridge is a graduate of the University of Toronto, Canada and has been an entrepreneur for over 25 years. During that time, she became a mother to three beautiful children, however, her second-born son was born with a rare chromosomal disorder which led Rose-Anne down a path of research into holistic alternatives for his well-being. During her studies and research, she fell in love with many energy healing modalities, essential oils, and everything she could find that pertained to brain health and nutrition which have all contributed to the healthier, happier lifestyle she lives today with her whole family.
Rose-Anne is a published, best-selling author, former radio show host and iTV personality. Her most recent work includes being the visionary and co-author of For the Love of Our Children - True Stories of Hope and Healing, working with families who have children with special needs and sharing their unique journeys. After her son was born with a rare genetic condition, she went on to become an advocate and wellness coach for special needs and eventually founded Real Life Changes, Families for HOPE Network, and Oily Masters. She has also created a guide on how to use essential oils and related products to help our special children live to their fullest potential.
Dr. Sej Chung completed her PhD in cancer genetics, genomics and development in the lab of Eric Knudsen (Rockwell Park Cancer Center). She is a Scientist at San Diego-based biotech BioLegend, and before that she was a Scientist at Rarebase coordinating external research projects on behalf of rare disease patient advocacy groups. She has extensive experience with in vitro 2D and organoid lines as well as high-throughput therapeutic screening approaches.
Job Titles:
- Assistant Director of Strategy and Operations for the Division of Integrative Genomics
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.
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.
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.