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


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.


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.

Building our Medical Advisory Board (MAB)

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 must 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.

We welcome applications to our Medical Advisory Board. If are interested in joining, send us your resume.