BOARD OF DIRECTORS
Stephanie & Aaron Forman
President & Vice President
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Stephanie Forman was born and raised in Albany, NY. She received a Bachelors in Mathematics from Siena College in 2003 and a Masters in Education from Drexel University in 2006. She taught high school level mathematics in Inner City Philadelphia and then moved back to New York where she transitioned to working a Senior Product Manager at Nuvalence. In 2008 she met Aaron and they wed in 2013. In 2014, Olivia was born. Five months after birth she was diagnosed with Wolf Hirschhorn Syndrome. In June of 2017 Stephanie ran the Friehofers 5K in Albany in honor of her daughter, raising money for WHS and running across the finish line with her in her arms. The race and everything in the year leading up to the race sparked Stephanie's desire to start Liv4TheCure which is now her passion.
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Aaron Forman was born and raised in Ballston Lake, NY. He received a Bachelors in Accounting from RIT in 1993. He lived in Atlanta for 11 years working for the Weather Channel running two of their IT departments. In 2005 he moved back to the Albany Area and started ScriptSure with his father and brother. Aaron is dedicated to his family and his daughter and is very involved in the medical and scientific aspects of WHS and research. Aaron and Stephanie also have a son born in 2016 and a daughter born in 2021.
Erin Whiteley
Secretary
Erin Whiteley was born and raised in Duanesburg, NY and moved to Florida in 2019 where she completed her undergraduate degree and recently just completed her Master’s Degree in Social Work at Saint Leo University. She currently resides in Jacksonville, FL. She is working in the mental health population as well as with a medically complex population with adults and children. Erin has been an integral part of Olivia’s life, was one of her caregivers and is passionate about children with special needs. Erin looks forward to channeling that passion into Liv4theCure and making a big impact on children’s lives.
Nancy Hellman
Board Member
Nancy Hellman has a Doctor of Education degree, Ed.D. from Russell Sage College, a Doctorate of Physical Therapy from Boston University and a Bachelor’s of Science in Physical Therapy from Russell Sage College. She has 32 years of experience as a physical therapist and is currently the Director of Clinical Education (DCE) for the Graduate Physical Therapy Program at the University of St. Augustine, Austin, TX. She was Olivia’s Early Intervention Physical Therapist for more than two years and has greatly facilitated Olivia’s abilities to sit, crawl, stand and walk. She herself is a mother of three grown children.
Diana Vaca McGhie
Board Member
Diana Vaca McGhie has over 20 years of experience working in leading nonprofits on various aspects of their mission delivery. Her public health experience is primarily in the areas of non-profit capacity building, international relations, business development and advocacy. She serves as the American Heart Association’s liaison with multi and bi-lateral organizations and is the portfolio lead for global advocacy. In her current role, Diana brokers and builds strategic alliances to improve public health outcomes with associations, the private sector and philanthropic organizations and crafts public health policy informed by sound data and implementation science. Diana brings a solid history of implementing inclusive and equity programming, managing, and overseeing projects in over ten countries and brings a unique perspective to grassroots mobilization and civic engagement. Diana holds a BSc. in Business Administration from Stony Brook University and a Masters in Public Administration from New York University.
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Ashley Collins Roy
Board Member
Ashley grew up in South Florida and graduated with her Bachelor of Science in Nursing in 2004 from Florida State University. She received her Doctorate of Nursing Practice from the University of Iowa in 2015. She spent over a decade providing nursing care for children with congenital heart disease at various healthcare systems across the country before transitioning into nursing administration. She currently resides in Meridian, MS and is the Chief Nursing Officer for Ochsner Rush Health.
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Her husband serves as a Commander with the British Royal Navy, training both US and foreign military pilots. In 2018, they had their first son, who was diagnosed with Wolf Hirschhorn Syndrome prenatally at 28 weeks gestation. She has a passion for improving access to care for patients and families of medically complex children due to her personal experience both as a pediatric nurse and as a parent.
Garrett C. Saiki
Board Member
Garrett was born in Japan and adopted into his family in Spokane, Washington. He was one of the first children adopted outside of Japan in years, with the help of the Spokane-Nishinomiya Sister Cities relationship (where he now serves on the board). He attended Linfield College to play football and study Biology, before getting a degree in Technical Communications from Eastern Washington University.
Garrett currently serves as the Head of Content Marketing for Indiana Economic Development Corporation. He has a commitment to driving positive change and fostering equitable communities, which he got while working earlier in his career in both healthcare and for non-profits.
Garrett brings a deep understanding of the unique challenges and opportunities nonprofits could face. He looks forward to cultivating meaningful connections and removing barriers that hinder equitable access to resources for families living with chromosomal deletion syndromes.
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Saurabh Sharma
Board Member
Saurabh was born and raised in Jaipur, a city in northern India. Trained as a Chemical Engineer, he worked in the metals and mining industry before moving to Gainesville, Florida, in 2014 to pursue his Master’s in Chemical Engineering at the University of Florida. As an Associate Director of Chemistry, Manufacturing, and Controls at Replay, he leads the design, development, and transfer of herpes simplex virus (HSV) gene delivery products for clinical and commercial manufacturing. Saurabh has extensive experience in gene therapy process development and manufacturing to deliver high-quality and innovative solutions for patients with rare diseases. Previously, Saurabh was involved in drug development for rare indications with Johnson & Johnson, Krystal Biotech, and AGTC (now Beacon Therapeutics), focused on X-linked retinoschisis (XLRS), X-linked retinitis pigmentosa (XLRP), Dystrophic epidermolysis bullosa (DEB), and age-related macular degeneration (AMD). He is passionate about leveraging his skills and expertise to support Liv4TheCure's mission of developing life-changing treatments for rare disorders.
We are recruiting new board members!
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To learn more click here to view the board member job description.
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Prospective candidates may email their resume and a brief cover letter describing their reason for applying to the Board to liv4thecure@gmail.com.
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BOARD EMERITUS
Sharon Duker
Former Treasurer
Sharon Duker has over 30 years’ experience in public and private accounting for small businesses and non-for-profit organizations. She received her bachelor’s degree in business administration from Siena College in 1976 and her CPA certification in 1979. Sharon parlayed her business experience and interest in education into a master’s degree in education from The College of Saint Rose in 2015. Sharon serves on the boards of the Bernard & Millie Children’s Foundation, Albany Medical Center, and Doane Stuart School.
Bernie Hillengas
Former Secretary
Bernie Hillengas is the Vice President of Business Solution for Rational Enterprise, an Albany, NY based enterprise information management software development company, responsible for working with clients to understand their business problems and collaborate with Rational Enterprise’s internal project teams to develop and deploy solutions to those problems. Lead and mentor Rational Governance’s Implementations team and RG Client Managers.
Prior to joining Rational in 2015, Mr. Hillengas spent nine years with Huron Consulting Group as a consultant, providing clients with defensible eDiscovery and Information Governance strategies and solutions aimed at reducing cost and risk while maximizing value to the enterprise. Prior to joining Huron: Mr. Hillengas served as Director of eGovernment & Cyberlaw for NYS Taxation & Finance, Office of Counsel (1995 – 2006); Assistant County Attorney, Albany County (1994 – 1995); Cooper, Erving, Nolan and Heller; Morgan Guaranty Trust Company of NY. He holds a JD from Albany Law School and Bachelor of Art from Manhattan College. Mr. Hillengas served on the Woodland Hill Montessori School Board from 2001 – 2015 holding various positions. Over the years he has volunteered his time for various groups such as Habitat for Humanity, Equinox, Big Brothers, First Presbyterian Church of Albany, and City Harvest to name a few. Mr. Hillengas is a licensed attorney.
Adrienne Pieluszczak
Board Member
Adrienne Pieluszczak has a bachelors’ degree in Community and Human Services and has gravitated to helping those in need from an early age. She spent several years in service coordination positions at Unity House of Troy, Belvedere of Albany and the Muscular Dystrophy Association where she assisted adults and children living with mental illness, traumatic brain injury, addictions and muscular dystrophy to achieve higher quality of life. When she had her first (of three) son she became a stay at home mother. During this time, she actively participated in many fundraising initiatives for a variety of worthy causes, the newest one being Liv4TheCure.
Jorge Blanco
Board Member
Jorge Blanco has over 7 years' experience in Technology, ranging from sales, development to management. After receiving his bachelors from the University of Florida, Jorge worked as a field archaeologist for the state of Florida for over 2 years. After which he decided to combine his liberal arts experience with technology. Since then Jorge has worked on various different projects ranging from enterprise software to digital marketing tools. While working at a prominent auto ad agency, Jorge lead the team that developed custom e-commerce websites for clients, during this tenure Jorge also worked with the digital marketing team in creating, developing and deploying digital marketing campaigns through Google, Facebook, etc. He joins the board of Liv4TheCure to provide guidance in digital marketing campaigns.