Leadership Team

Management

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.

Her family resides in New York City where Bina earned her B.S. in Finance & Marketing from NYU Stern Business School.

KAITI SYVERSON

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. Visit our partners, – leaders in fashionable footwear!

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. Browse our, https://fakewatch.is with a variety of options to suit every taste and budget, available to buy online.

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

Legal Advisory

安德鲁在波尔西内利执业，成为非营利组织主席，专注于慈善捐赠、慈善事业以及代表第三个慈善组织。安德鲁为组织提供以下方面的咨询：组建和组织结构、慈善和超额福利/自我交易建议、公司治理、融资款和州筹集捐赠资金、公司政策、UBTI问题和投资、捐赠和限制性基金的设立和修改、受托责任、三次捐赠款、税务和报告、计划捐赠和特殊活动。

安德鲁与全球一些最大的跨国非营利组织、基金会、使命驱动型公司、社会企业家和慈善家合作。20年来，他一直担任牲畜组织的外部总法律顾问，提供实用和战略建议。他为一些最重要的交易和项目提供咨询，其中包括构建各种非营利/营利混合组织、影响力投资、社会和发展收入债券、历史上最具历史意义的艺术品收购之一、创新的孵化器模式以及一些最广泛的事业营销计划。

安德鲁认识到，复杂的问题往往需要独特的方法来解决，因此他采取了一种多学科协作的方法与客户打交道。他在 Polsinelli 的战略非营利解决方案团队的工作就体现了这种方法。

作为一名活跃的演讲者和媒体撰稿人，安德鲁曾被 《时代》 杂志、 《纽约时报》、 《华尔街日报》 和 《国际先驱论坛报》等引用。他担任《慈善和非营利组织法重》该剧的顾问重新阐述了管理全国慈善机构的法律。

Josh Wolf

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.

Bina Maniar Shah

Founder & CEO

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

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 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.

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.

Shannon Clarke

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.

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.

Wissam Nesr

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 And Scientific Advisory Board

Wendy Chung, M.D., Ph.D.

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.

DR. SCOTT DEMAREST

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.

indu Navar

Founder, EverythingALS

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 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.

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.

KEVIN HICKEY

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!

ROSE-ANNE PARTRIDGE

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/

FAY MINTY

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 & 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.

EMILY UNGS

Emily Ungs lives in Waterloo, IA with her fiance, ShaVar, and their three children – ShaVar, SaMiyah, and SaMara. ShaVar (aka little ShaVar) was diagnosed in August of 2018 on 8p day with Deletion of Chromosome 8p. Emily works from home in Accounting for a Medical Revenue Cycling company. We thoroughly enjoy being a part of the PLB, bringing families together to collaborate and share their successes and struggles and working together to provide all 8p heroes with a full, fun, and functional way of life. In our free time we enjoy playing outside with our puppy, taking random weekend roadtrips, and watching (big) ShaVar play football!

Special Thanks

Ariana Speyer, copy editor for several sections

Saloni Hemnani, logo designer

Chromosome 8P

For Families

Resources

Join Cause

About Us

Research

Resources

Providers

Leadership team

Management

Bina Maniar Shah

KAITI SYVERSON

KAITI SYVERSON

Patient Engagement Manager

Ethan Perlstein, PhD

Research Director, Scientific CureGuide

Sam Finlayson, MD, PhD

Sam Finlayson, MD, PhD

Travis Zack, MD, PhD

Whitney Dolan, PhD

Whitney Dolan, PhD

Andrew M. Grumet

Legal Advisory

Josh Wolf

Josh Wolf

Board of Directors

Bina Maniar Shah

Jahn Marie Surette

Jahn Marie Surette

Mehul Shah

Dr. Thomas Peterson

Dr. Thomas Peterson

Shannon Clarke

Wissam Nesr

Wissam Nesr

Medical And Scientific Advisory Board

Wendy Chung, M.D., Ph.D.

DR. SCOTT DEMAREST

DR. SCOTT DEMAREST

indu Navar

Patient Leadership Board

Caregivers of 8p heroes that meet monthly and volunteer 5 hours or more per month to support the mission.

KAITI SYVERSON

AMBER HOWLAND

AMBER HOWLAND

WILL NORRIS

KEVIN HICKEY

KEVIN HICKEY

ROSE-ANNE PARTRIDGE

FAY MINTY

FAY MINTY

TALENA, DEACON & DELILAH

MARY, ZACH & JUNE

MARY, ZACH & JUNE

EMILY UNGS

Special Thanks

JOB Title : Communications and Social Media Manager

Job Type : Part-time position average 20 hours/week. potential to evolve into a full-time.

Salary : The position is compensated with a base salary that will be commensurate with the candidate’s experience.

Location : Remote; preferably based around NYC/tri-state area to facilitate regular in-person meetings

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The Project 8p Foundation (Project 8p) was created in 2018 to:

The Project 8p Foundation (Project 8p) was created in 2018 to: