BINA MANIAR SHAH
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.
Bina leverages her business and entrepreneurial background and network to build bridges to improve efficiencies in a Collaborative Impact model for Team Science.
Patient Engagement Manager
In 2019, eager to learn more about her daughter’s diagnosis, Kaiti attended Project 8p’s first Family and Science Conference. Drawn to the strength of the 8p community, she left the conference with a new calling, an opportunity to serve. Kaiti immediately stepped into the Patient Leadership Board’s (PLB) Community Support Chair position, where she assisted in the creation of Project 8p’s community programs, before eventually taking on the role of Co-Chair to the PLB in 2022. While she will continue to donate her time as Co-Chair of the PLB, Kaiti is enthusiastic about her next opportunity as Patient Engagement Manager and eager to continue serving the 8p community. As a parent and peer, Kaiti is passionate about advocating for 8p heroes and has a desire to support families through their journey.
Kaiti lives in Alaska, with her husband and two children, where she also earned a B.A. in Elementary Education. She is the proud mother to 8p hero, Chloe. Kaiti is dedicated to Project 8p’s mission, she believes in the power of the 8p community and knows that together we will advance our understanding and care of the 8p heroes that unite us.
Ethan Perlstein, PhD
Research Director, Scientific CureGuide
Dr. Ethan O. Perlstein is responsible for setting the scientific direction of the Foundation. Ethan uniquely straddles the worlds of Silicon Valley entrepreneurship, drug discovery and development, and patient-led medicine. Ethan received a PhD in 2006 from Harvard University in the Department of Molecular and Cell Biology while working in the laboratory of Professor Stuart Schreiber. He completed an independent postdoctoral fellowship at the Lewis-Sigler Institute at Princeton University from 2007 to 2012.
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.
Since its founding in 2014, he is CEO of Perlara PBC, the first biotech PBC partnering with highly motivated families to develop treatments and cures for rare genetic diseases applying “evolutionary pharmacology.” Perlara’s first joint venture Maggie’s Pearl is the commercial sponsor of a Phase 3 trial of epalrestat for the treatment of PMM2-CDG at the Mayo Clinic. Prior experiences include the Christopher & Dana Reeve Foundation as their first Chief Scientific Officer and later as the CEO of the EveryONE Foundation (EOF), cofounded by Dr. Tim Yu and Julia Vitarello, whose mission is to make individualized medicines safe and accessible to everyone.
Sam Finlayson, MD, PhD
Scientific Cure Guide
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.
Travis Zack, MD, PhD
Scientific Cure Guide
Dr. Travis Zack grew up in Hawaii and went to school at the University of California, Berkeley, double majoring in physics and integrative biology. He worked in Rameen’s lab as a graduate student in the biophysics program of Harvard University. While a member of the Lab, his research focused on uncovering new cancer vulnerabilities predicted by copy-number alterations using computational genomics. After obtaining his PhD, Travis enrolled in medical school at Harvard and MIT’s Health Sciences Technology program, and is now a resident at UCSF. Travis hopes to follow in the footsteps of Dr. Beroukhim as a successful oncology physician scientist.
Fun fact: In his free time, Travis is an avid hiker and amateur gardener.
Whitney Dolan, PhD
Scientific Cure Guide, Research Project Manager
Dr. Whitney Dolan completed her PhD in Biochemistry with a specialization in Computational Life Science at Purdue University, studying transcriptional mechanisms of eukaryotic gene regulation.
As a co-founder of a synthetic biology company, Whitney has experience leading small research teams from idea to proof-of-concept. She has also worked as a freelance science editor, helping researchers to effectively communicate their work to both scientific and lay audiences. Most recently, she was a Senior Scientist at Rancho Biosciences where she developed data processing pipelines and interactive visualizations to help both large and small pharmaceutical companies make their data FAIR.
Andrew M. Grumet
Andrew practices at Polsinelli where he is the Chair for Nonprofit Organizations. He focuses on charitable giving and philanthropy and the representation of domestic and international tax-exempt organizations. He counsels organizations on formation and organizational structuring, compensation and excess benefit/self-dealing advice, corporate governance, fundraising and state solicitation regulatory matters, corporate policies, UBTI issues and investments, establishment and modification of endowments and restricted funds, fiduciary duties, domestic and international grantmaking, tax and financial reporting, planned giving and special events.
Andrew partners with some of the largest multinational nonprofit organizations, foundations, mission driven companies, social entrepreneurs and philanthropists around the globe. For over 20 years, he has served as outside general counsel to numerous organizations providing practical and strategic advice. He has advised on some of the most significant transactions and projects, including, among others, structuring a variety of nonprofit/for-profit hybrids, impact investments, both social and development income bonds, one of the most historic art acquisitions in history, innovative incubator models, and some of the most widely seen cause marketing programs.
Recognizing that complex problems often require unique approaches, Andrew takes a collaborative multi-disciplinary approach to the clients he works with. His work with the Strategic Nonprofit Solutions team at Polsinelli exemplifies this approach.
As an active speaker and media contributor, Andrew has been quoted in TIME magazine, The New York Times, The Wall Street Journal and The International Herald Tribune, among others. He serves as an Advisor to the Restatement of the Law of Charities and Nonprofits, a restatement that clarifies the law governing charities nationwide.
Finance and Operations Consultant
For the past three years, Josh (he/his) has provided finance and operation training, coaching, and services to over 100 startup and growing multi-entity social justice , rare disease, fair housing, and technology focused nonprofits.
Prior to this work, Josh served as the Chief Operating Officer for Cory Booker’s Presidential Campaign, Director of Operations for the Mozilla Foundation, Director of Operations for MoveOn.org, Director of Data Services for the Democratic National Committee, and over a decade in political organizing and management. Throughout each recent finance and operation role, Josh established and managed the technology and financial and operating systems and providers that ensured the organizations he served were resilient, sustainable, and had a solid foundation for growth.
Board of Directors
The Board of Directors has general oversight, fiduciary, program development and ambassadorial responsibilities. The board develops and approves strategic plans that define the framework that guides the leadership team in daily activities ensuring the organization is closer to achieving its mission.
Jahn Marie Surette
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.
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.
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 17 years and has served in many capacities, all of which with the same goal in mind, ensuring care access and betterment for those in need. He has achieved many 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 his 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, 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. He has founded his own research organization known as Peterson Research Consulting, whose goal is to provide affordable research options and consulting services to any organizations in need. 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, Chairman of the Board for another non-profit as well as serving as a commissioner for his city health department. His key areas of research include oncology, hematology, pediatrics and rare diseases in genetics.
Shannon’s professional and volunteer work has focussed 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 heros 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.
Wissam and his wife Hiba are very dedicated to the prosperity of Project 8p. They are parents of an 8p hero, Ayla. Wissam brings 20 years of executive expertise and board leadership. Wissam Nesr CEO Webcor Group. Webcor Group is an agro industrial food distribution and production company. Hiba S Nesr CSR and Communication Director Webcor group. Founder and president of the Nesr Art foundation, a foundation that aims to support Artists from Angola and the Region. Both Wissam and Hiba are Belgium Lebanese nationals and travel between Geneva, Beirut and Belgium. They currently live in Dubai. They have four children, Petra,Julia,Ali and Ayla.
Medical & Scientific Advisory Board
DR. WENDY CHUNG M.D., Ph.D.
Medical & Scientific Advisor
Precision Medicine Resource Leader-Irving Institute
Medical Director: Columbia Genetic Counseling Graduate Program
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.
DR. SCOTT DEMAREST
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.
Medical & Scientific Advisor
Over the past 20 years, Indu has experience in being Co-founder/CEO of software companies and taking them through successful exits, strategic partnerships and M&A. She is an Investor and Strategic Advisor in many startups. She is currently CEO and Founder of EverythingALS. She co-founded geek.ly and Xendota. Prior to that, Indu was Managing Director at Woodside Capital Partners where she advised software companies on strategic financing transactions and M&A. She was Founder and CEO of Serus Corporation, provider of SAAS platform for companies with outsourced manufacturing. The company was acquired by E2OPEN (Nasdaq:EOPN). Prior to Serus, Indu has been on the ground floor of several successful technology companies including Healtheon (WebMD), Silicon Graphics, Black and White Software (Segue). She started her career at NASA in Moffett Field, California. Indu has B.S Electrical Engineering from Bangalore University, India and M.S. in Computer Science from California State University, Chico.
Patient Leadership Board
Caregivers of 8p heroes that meet monthly and volunteer 5 hours or more per month to support the mission.
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 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.
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.
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!
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.
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.
You can obtain a copy of her latest book, For the Love of Our Children – True Stories of Hope and Healing. For every book sold, $5 will go toward helping to create a path to treatment for neurological chromosomal disorders by funding research and a standard of care. https://reallifechanges.com/project8p/
Zach Moore lives outside of Denver, Colorado with his wife Rachel and their three children. His oldest daughter Amielle was diagnosed with 8p at birth in 2011. As a career, Zach has provided technology consulting services to nonprofits for nearly a decade, focusing his efforts on fundraising, community engagement, and financial management.
Emma West lives in Fairfield, CT with her husband Matt and their son Ben. Their silly and sweet 8p hero, Ben, was diagnosed with 8p Inv/dup/del in 2021. Upon receiving Ben’s diagnosis, Emma knew she wanted to be a part of and support the larger 8p community. She is grateful for the opportunity to serve on the Patient Leadership Board. Between work and appointments, Emma enjoys training for half marathons and having dance parties in the kitchen with Ben and Matt.
Fay Minty was inspired as a teenager in New Jersey to work in medical research so completed a degree in Medical Biochemistry (Glasgow University, Scotland) and PhD in Cancer Biology studying Telomeres in Normal Human Epidermal Keratinocytes at the Beatson Institute for Cancer Research (Glasgow University, Scotland). She then received a Ruth L. Kirschstein National Research Service Award to work in Dr James Rheinwald’s laboratory (Department of Dermatology, Harvard Skin Disease Research Centre) establishing protocols to differentiate human embryonic stem cells into keratinocytes (skin cells).
In 2010, Fay had her own 8p hero, Madison, and spent the next 6 years at home working with Speech and Language, Occupational and Physical Therapists to integrate their treatment strategies into Madison’s daily life during and in between music, dance, swimming, social occasions, and medical appointments. 50-hour weeks in the lab were a breeze compared to this new schedule with all its various challenges!
Fay returned to research in 2015, but now works in a supportive capacity as the Wellcome Trust PhD Programmes Manager at King’s College London managing both the Cell/Advanced Therapies for Regenerative Medicine and the Neuro-Immune Interactions in Health and Disease PhD Programmes.
As a member of the Parent Leadership Board – Fay aims to support with scientific communication, helping parents understand research in the 8p field and helping the wider scientific community understand the incredible resources available through Project 8p and how their contributions will change lives.
Talena, Deacon & Delilah
Talena hails from the great Pacific Northwest. She resides in Portland, Oregon with her husband and daughter. Her husband, Deacon, works in finance. Talena and Deacon’s daughter Delilah was born in March of 2021. She was diagnosed with 8p Inv Dup Del Syndrome and a uniparental monosomy 16 in February of 2022. Just like her name sounds. Delilah is utterly delightful.
Talena is a former fine dining line cook and still an aspiring chef. She’s a graduate of Oregon Culinary Institute and achieved a bachelors in Marketing from Portland State University. Although she has taken a pause from the professional kitchen. Her home kitchen is where you will always find her experimenting. Delilah loves watching her Mom cook. Delilah and Talena are two peas in a pod. They are learning and navigating what it means to be an 8p Hero and a Mother of an 8p Hero.
Participating in the Patient Leadership Board is an honor and a great privilege for Talena. An opportunity to grow her knowledge of 8p and serve the 8p community as a whole.
Mary Zach and June
Mary lives in Oklahoma City, OK with her husband, Zach, and daughter, June. June was born in 2019, and at 22 months old after undergoing genetic testing was diagnosed with 8p Inverted Deletion/Duplication. After learning about Project 8p, Mary and Zach were thankful for the connection it brought through meeting other families and also wanted to get more involved to continue supporting and furthering the cause of research and progress for June’s diagnosis. Prior to becoming mom of June, Mary worked as a Child Life Specialist supporting children and families as they faced unexpected medical challenges. This has helped to shape the way she has taken on the role of parenting a child with an unexpected diagnosis and adapting to the new path her and her family are now on. In her spare time, Mary loves traveling, cooking, spending time with family and friends, and having endless dance parties with June.
Special Thank You to Our Generous Contributors
Ariana Speyer, copy editor for several sections
Saloni Hemnani, logo designer