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About FAST

Our Staff

Alana Newhouse bio photo

Alana Newhouse

President

Email: alana.newhouse@cureangelman.org

Alana is also the editor-in-chief of Tablet Magazine, which she founded in 2009. Originally conceived as a platform for Jewish news and ideas on the web, it has grown into an address for reporting and arguments regularly cited by the New York Times, the Washington Post, The New Yorker, and others—read by readers of all backgrounds, from around the world. Before journalism, Alana worked for legendary New York City political guru David Garth. She is a graduate of Barnard College and Columbia University’s School of Journalism. She lives in New York City with her husband and family, including her son Elijah, who has Angelman syndrome.

Meet Alana Newhouse
Ryan Fischer bio photo

Ryan Fischer

Chief Operating Officer

Email: ryan.fischer@cureangelman.org

Ryan works in collaboration with FAST’s President to establish, direct, and achieve the organization’s short and long-term strategic goals and objectives across all operational areas, including general administration, programs, grants, and external relations. He maintains and builds effective relationships with key stakeholders, including Congress, regulators, pharmaceutical companies, other foundation leaders, and the broader rare disease advocacy community. Prior to joining FAST, Ryan served as Chief Advocacy Officer for Parent Project Muscular Dystrophy (PPMD). Ryan held various roles within PPMD over 18 years helping to grow the organization into one of the leading rare diseases advocacy nonprofits globally.

Meet Ryan Fischer
Kena Richert bio photo

Kena Pearson

Chief Financial Officer

Email: kena.pearson@cureangelman.org

Kena, a founding board member of FAST, transitioned to staff in March 2020. Prior to FAST, Kena provided audit services to Fortune 500 companies in the assurance practice at PricewaterhouseCoopers LLP. Kena is a member of the American Institute of Certified Public Accountants and the Texas State Board of Public Accountancy. She is a Chartered Global Management Accountant. Kena has three children; her oldest daughter, Ashley, lives with Angelman syndrome.

Meet Kena Pearson

Michele Golombuski

Chief Development Officer

Michele brings nearly three decades of experience in non-profit fundraising to FAST. She will provide strategic leadership for all aspects of FAST’s philanthropic efforts as the organization enters a pivotal time with scientific advancements in Angelman syndrome research. Prior to joining FAST, Michele was at the Michael J. Fox Foundation for Parkinson Research (MJFF) and National Foundation for Facial Reconstruction (currently MyFace), an organization that raising money to transform the lives of children and adults with facial differences. Michele holds a BA in Religion from Lehigh University and a MS in Nonprofit Management from Milano School of Public Policy, The New School.

Meet Michele Golombuski
Jennifer Panagoulias bio photo

Jennifer Panagoulias

Head of Regulatory and Policy, Co-director of ABOM

Jennifer has worked in drug development for over 20 years, primarily focused on advancing global development programs for the treatment of rare neurological diseases. Her background and experience working with global regulatory agencies to support diverse drug and biological therapy development programs in both the development and post-marketing strategies greatly benefits the FAST community. She is the co-director of the Angelman Syndrome Outcome Measure and Biomarker Consortium (ABOM) and has recently taken on the role of Chief Operating Officer for AS² Biotherapeutics, focused on accelerating drug development for individuals living with Angelman syndrome. Jennifer resides in Danvers, MA. She has a niece who lives with Angelman syndrome.

Meet Jennifer Panagoulias
Allyson Berent-Weisse bio photo

Dr. Allyson Berent

Chief Science Officer

Allyson is a veterinarian in New York City. She received a bachelor’s degree and doctor of veterinary medicine degree from Cornell University. She is a member of the American College of Veterinary Internal Medicine and is a specialist in internal medicine and interventional radiology/interventional endoscopy. She is the director of interventional endoscopy at one of the largest specialty animal hospitals in the world and joined FAST in 2015 becoming our Chief Science Officer. Allyson was a co-founder of GeneTx Biotherapeutics serving as their Chief Operating Officer prior to the acquisition of the company by Ultragenyx Pharmaceuticals. Allyson is the co-director of the Angelman Syndrome Outcome Measure and Biomarker Consortium (ABOM) and the International Angelman Syndrome Research Council (INSYNC-AS), and has recently taken on the role of Chief Development Officer for AS² Biotherapeutics, focused on accelerating drug development for individuals living with Angelman syndrome.

Meet Dr. Allyson Berent

Edwin Weeber, PhD

Head of Research and Discovery

Ed has a long history not just with Angelman syndrome, but with FAST. To start with, he led pioneering initiatives aimed at ameliorating the symptoms in the Angelman syndrome mouse model. Through a multifaceted approach encompassing genetic interventions, protein supplementation strategies, and gene therapy techniques, his groundbreaking work shed light on the underlying mechanisms of the disorder and the potential for therapeutic intervention. In addition, he helmed the first AS consortium of scientists from different specialties and academic laboratories to collaborate and focus on discovering potential therapies for AS. This collaborative effort was dedicated to the development of promising therapeutic avenues.

Meet Edwin Weeber, PhD
Niki Armstrong headshot

Niki Armstrong, MS, CGC

Vice President of Genetic Services and Education

Email: niki@cureangelman.org

Niki is a board-certified genetic counselor with more than two decades of experience of working with families living with rare conditions.  Niki leads genetic services and education at FAST to ensure that every family understands genetics, clinical trials, and AS data. Prior to FAST, Niki worked in patient advocacy in Duchenne, leading Duchenne newborn screening efforts and providing genetics and clinical trial education. Niki lives in the Tampa Bay region, with her twin daughters, husband, and assorted pets.

Schedule a 1:1 meeting with Niki by clicking here.

Meet Niki Armstrong, MS, CGC
Meghan Edberg Bio Photo

Meghan Edberg, MEd

Director of Public Engagement

Email: meghan.edberg@cureangelman.org

Meghan spent 17 years in a variety of roles working with diverse populations building a strong skillset in business and counseling before joining FAST. She supports how FAST engages with the community on a strategic, operational, and personal level. She resides in Rosemount, MN with her husband and two children. Her son William lives with Angelman syndrome.

Meet Meghan Edberg, MEd
Laura Foglyano bio photo

Laura Foglyano

Meetings & Operations Manager

Email: laura.foglyano@cureangelman.org

Laura brings 17 years of experience working in Philanthropy and Marketing at Cleveland Clinic to her role at FAST. She planned events ranging from large gala fundraisers and hospital grand openings to a Presidential Debate. Laura’s background in healthcare marketing and fundraising helps FAST stay organized, efficient and focused on its mission. She resides in Shaker Heights, OH with her husband, two children, and rescue dog.

Meet Laura Foglyano
Elizabeth O'connor bio photo

Elizabeth O'Connor

Development Advisor

Email: elizabeth.oconnor@cureangelman.org

Elizabeth brings over fifteen years of fundraising experience. She has worked in both health care and education philanthropy. In her role at FAST she provides leadership and strategy guidance to the team to raise critically needed funds to support the mission of FAST. Elizabeth has three children; her oldest son, Ryan, lives with Angelman syndrome.

Meet Elizabeth O'Connor
Ellen Koekoeckx profile photo

Ellen Koekoeckx

Global Advisor

As a global affairs advisor Ellen is responsible for creating, implementing, and overseeing FAST's global strategy and network. She plays an important role in identifying new potential partners and sharing best practices throughout the network. Her main objective is to manage the global chapters and ambassadors to ensure FAST's reach to Angelman syndrome families across the world. She also provides support to groups in developing their knowledge and abilities to strengthen the global movement. With more than a decade of expertise in the pharmaceutical sector, during which she has effectively introduced multiple drugs to the market, she possesses a comprehensive understanding of the entire drug lifecycle—from initial development through regulatory approval to securing reimbursement. She resides in Belgium, with her husband, 2 stepchildren and her daughter Hazel who lives with Angelman syndrome.

Meet Ellen Koekoeckx
Nycole Copping bio photo

Nycole Copping, PhD

Science Director

Email: nycole.copping@cureangelman.org

Nycole focuses on grant management and engagement with the science community in experimental design and planning. She works in tandem with our Chief Science Officer to manage our rapidly and robustly expanding translational research projects. Prior to joining the team, Nycole spent 10 years working with preclinical models of rare neurodevelopmental disorders at UC-Davis in Dr. Jill Silverman’s laboratory. She and her husband reside in Sacramento, CA with their two corgi dogs, Rodney and Roland.

Meet Nycole Copping, PhD
Maiddy Dunigan profile photo

Maiddy Dunigan

Legal Advisor

Email: maiddy.dunigan@cureangelman.org

Maiddy brings over 25 years of expertise in tax law alongside a deep commitment to the Angelman syndrome community. Since 2006, she has been actively involved in the community. As a founding board member of FAST, Maiddy played a pivotal role in shaping the organization's direction. Maiddy now lends her invaluable legal acumen to FAST as a trusted advisor, offering strategic counsel and guidance. She is a member of the California State Bar Association and the Bar of the Supreme Court of the United States. Maiddy currently resides in Florida with her husband and four children. Her son, Jaxson, lives with Angelman syndrome.

Meet Maiddy Dunigan
Isabel Orellana de Chang profile photo

Isabel Orellana de Chang

FAST Search & Rescue Lead

Email: isabel@angelmansearchandrescue.org

Isabel Orellana de Chang leads the FAST Angelman Search & Rescue initiative, a global endeavor aimed at locating families affected by the syndrome. Isabel serves as a board member of FAST LatAm and is the founder of Angelman Guatemala. She resides in Guatemala with her husband, daughter and son, who lives with Angelman syndrome.

Meet Isabel Orellana de Chang
Jena Berndt bio photo

Jena Berndt

Family Coordinator

Email: jena.berndt@cureangelman.org

Jena is responsible for driving awareness of initiatives, programs, and events, and developing new community programs. As someone passionate about science and communicating FAST-funded research initiatives, she plays an instrumental role in sharing information, education, and support with others. Jena and her husband, Sean, live in Fall River, Wisconsin. They have five children; their daughter, Payslie, lives with Angelman syndrome.

Meet Jena Berndt
Bianca Cortez bio photo

Bianca Cortez

Database Administrator

Email: bianca.cortez@cureangelman.org

Bianca spent nearly a decade in the education field in an administrative role where she maintained school databases before joining FAST. This background helps FAST organize and curate data to support its mission. She resides in Chicago, IL with her two children.

Meet Bianca Cortez
Amber avatar

Amber Bridgers

Staff Accountant

Email: amber@cureangelman.org

Amber supports the Chief Financial Officer with the day-to-day functions. She brings nearly two decades of experience in business administration and accounting. Before joining FAST, Amber worked as a staff accountant at Service Tech Inc. and Texas Sun and Shade. She received her degree in Business Administration and Management from Austin Business College.

Meet Amber Bridgers

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Disclaimer

This website contains information for a broad audience and may include information on current and upcoming programs that are not yet approved or accessible The information provided is for general informational purposes only and is not intended as medical advice, diagnosis, or treatment. While FAST strives to provide accurate and up-to-date information, the content on this site may not always reflect the most current research or clinical guidelines. The inclusion of clinical trial information, treatments or specific healthcare providers does not imply endorsement, recommendation or guarantee of safety, efficacy, or availability. Reliance on any information provided by this website is solely at your own risk. FAST disclaims any liability for any errors or omissions in the information provided or for any decisions made based on this information. For personalized medical advice or specific health concerns including participation in any clinical trial, please consult a qualified healthcare professional.