About Us

“All our dreams can come true, if we have the courage to pursue them.”
-Walt Disney

Mission Statement

The mission of The Parry Romberg Foundation is to prevail over this rare and life altering syndrome and restore the lives of those affected.

Guiding Principles

1. Raise Awareness

Raise awareness about the effects of this life-altering disorder to targeted audiences in a never-ending quest for change after two centuries of neglect.

2. Explore

Explore and pursue all opportunities for medical grants, funding and research that will lead to positive outcomes for the PRS community.

3. Fundraise

Open fundraising opportunities on behalf of a medically ignored population in urgent need of a proper diagnosis, treatment options and ultimately, a cure.

4. Uphold

Uphold the mental and physical health of those afflicted with PRS through all options available.

5. Empower

Empower those with PRS to pursue fundraising and bring awareness to their personal stories.

Meet Our Team

Board

Jo-Ann D'Angelo

Foundation Founder and Chair

Jo-Ann was diagnosed with Parry Romberg Syndrome at age 10 and has been an advocate for research for more than three decades. She is a member of the CT. Rare Action Network, The Romberg’s Connection and the Facebook Parry Romberg Syndrome (PRS) Group.

Sheila D'Angelo

Foundation Co-chair

Sheila has extensive non-profit experience including her 8-year member participation for the Danbury Hospital Gala fundraiser as well as her volunteer work at the Danbury Hospital golf tournament.

Jeff La Grotte

Foundation Treasurer

Jeff is a CPA and has previously served as a treasurer of a small non-profit.

Joy Steinacher

Foundation Secretary

Joy founded a community-based non-profit to promote children, education and the environment and served as an officer and a board member of that organization for over 10 years. She has experience developing budgets, timelines and marketing for fundraising events.

Susan Pearson

Foundation Member

Susan served on the Board of Trustees at the Jewish Community Center of Harrison for 8 years. She also served as President of the Purchase School PTA and Harrison High School PTA.

Volunteers

Caroline D'Angelo

Foundation Social Media Advisor

Caroline is a Senior honors student at Danbury High School and a captain lacrosse goalie. She has signed to play lacrosse at the University of New Haven, she will be studying Cybersecurity/Networks. Caroline is a supporter of NORD and the rare disease community.

Katherine D'Angelo

Foundation Social Media Advisor

Katherine is a member of the Danbury Chapter of the National Honor Society and a Danbury High School lacrosse player. Katherine is a supporter of NORD and the rare disease community.

Marilyn Neal

Honorary Mention

Honorary Mention goes to Marilyn for her invaluable contributions to the Romberg’s Connection for over two decades as moderator and research
advocate. She also contributed content and insights to the development of this website. The Foundation is grateful for her many contributions.

Introducing our Medical Advisory Board (MAB)

We are proud to introduce our impressive and all-volunteer Medical Advisory Board (MAB). Each Board member possesses unique professional credentials that will allow them to support our patient population and help the Foundation meet its research goals.

Oren Ganor

MAB Advisory Board

Dr. Oren Ganor is a distinguished plastic and reconstructive surgeon specializing in complex reconstruction, including microsurgery and soft tissue reconstruction. He holds the position of Assistant Professor at Harvard Medical School. Dr. Ganor earned his MD from the Hebrew University, Hadassah Medical School in Israel, and honed his skills through postgraduate training at Rabin Medical Center in Tel-Aviv. His professional journey brought him to Boston, where he engaged in two Harvard Medical School clinical fellowships. He broadened his expertise at Boston Children’s Hospital as a Pediatric and Craniofacial fellow and ultimately assumed the role of an attending surgeon in the Department of Plastic and Oral Surgery.
Dr. Ganor has been actively engaged in clinical care of the most complex pediatric and congenital conditions including trauma, cancer care and craniofacial anomalies. He is deeply invested in various research projects dedicated to advancing the holistic health and wellbeing of young adults. His dual commitment to research and clinical expertise is evident in his dedicated pursuits in reconstructive microsurgery, pediatric anomalies, Parry-Romberg disease, soft tissue deficits, and breast morbidities.

Peter Fernandes

MAB Advisory Board

Peter M Fernandes is a Consultant Neurologist/Attending Physician currently working in Southampton, United Kingdom. Peter has an undergraduate degree in Immunology from the University of Oxford and obtained his medical degree from the University of Oxford in 2008. Peter trained in neurology in Edinburgh, Scotland, working with Professor David Hunt and Professor Jon Stone in the Neurosciences Department. During his residency, Peter obtained a PhD in Neuro-Biochemistry at the University of Edinburgh, and completed an internship in Neuro-Inflammation/Neuro-Infection at the National Institutes of Health in Washington DC under Professor Avi Nath. Peter is widely published, with over 20 peer-reviewed publications to date. Peter’s current clinical interests include neuro-inflammatory disorders such as multiple sclerosis and neuro-sarcoidosis, and he has participated in the Edinburgh/Scottish Parry-Romberg clinic as well as being in the process of developing a specialist Parry-Romberg Syndrome neurology clinic in the UK.

Joana MATOS

MAB Advisory Board

With over two decades of experience in the biomedical sector, Dr. Joana Matos has been a leader in the field of rare disease research. Dr. Matos received a Bachelor of Science degree in Microbiology and Genetics from the University of Lisbon and a Ph.D. in Medicine (Physiology) from Aarhus University in Denmark. She also holds a Certificate of Applied Statistics from Penn State University. Dr. Matos’ career path has always been underpinned by an unwavering passion for Rare Diseases. Dr. Matos pursued physiology research in academia before transitioning to the realms of Real-World Data (RWD) and Health Economics and Outcomes Research. Her primary goal has been to make a more significant and direct impact on the field of Rare Diseases and the associated patient community. Currently, she leads analytics and innovation at a biotech company specializing in gene therapies. Her personal experience with Parry Romberg syndrome has provided a profound connection to the patient community, fueling her determination to contribute meaningfully to research on this rare syndrome.

An effective MAB will be essential to the success of The Parry Romberg Foundation. Given that PRS is both a rare and orphaned disorder, the MAB will be able to navigate within the medical, scientific and pharmaceutical communities to advise the Foundation and develop sound medical practices.

The primary functions of the MAB will be to:

Offer expertise on scientific projects, statements and publications

Provide expertise on the clinical needs of the patient population.

Ensure that the Foundation’s policies, research, marketing communications and publications meet the highest scientific standards.