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NATIONAL FOUNDATION FOR FACIAL RECONSTRUCTION INC
NEW YORK, NY · EIN 136013760 · Form 990 · FY2023 · Medium ($1M-$10M) · myface.org
revenue
$3.0M
expenses
$3.6M
net assets
$34.5M
employees
7
volunteers
138
program ratio
76%
mission · from form 990

MYFACE IS A NONPROFIT ORGANIZATION DEDICATED TO TRANSFORMING THE LIVES OF PATIENTS WITH FACIAL DIFFERENCES. WITH A SPECIAL FOCUS ON CHILDREN AND THEIR FAMILIES, MYFACE FUNDS MEDICAL, SURGICAL, DENTAL, SPEECH AND PSYCHOSOCIAL SERVICES, AS WELL AS RESEARCH AND PUBLIC AWARENESS.

profile · synthesized from sources

Nonprofit organization supporting individuals and families affected by craniofacial differences through community programs, support services, and advocacy. Offers family camps, local support groups, educational initiatives, and care coordination, with a focus on children and psychosocial well-being. Operates nationally with a presence in New York and Chicago.

irs program accomplishments · form 990 part iii · fy2023

What they reported doing

  1. #1 primary $643K
    DELIVERY OF DIRECT SERVICES THAT MEET THE DAY-TO-DAY NEEDS OF THE CRANIOFACIAL COMMUNITY, INCLUDING SUPPORT GROUPS FOR CHILDREN, PARENTS AND ADULTS, NEWBORD CARE KITS SPECIALLY DESIGNED FOR BABIES BORN WITH A CRANIOFACIAL DIFFERENCE, COMPLIMENTARY HOUSING FOR FAMILIES TRAVELING TO NEW YORK CITY FOR TREATMENTS, AND COVERAGE OF THE COSTS OF TRAVEL AND MEDICAL EXPENSES FOR THOSE IN NEED.
  2. #2 $517K
    ACCESS TO EDUCATION AND RAISING AWARENESS AROUND LIVING WITH A CRANIOFACIAL CONDITION. MYFACE WORKS WITH EXPERTS IN THE FIELD TO PRODUCE TOPIC-SPECIFIC WEBINARS, ONLINE RESOURCES AND CONTENT THAT SERVE TO EDUCATE AND INFORM THE CRANIOFACIAL COMMUNITY TO ARM THEM WITH THE TOOLS THEY NEED TO MAKE BETTER DECISIONS. THROUGH PROGRAMS SUCH AS OUR WONDER PROJECT, WE TEACH STUDENTS WHAT IT'S LIKE TO LIVE WITH A FACIAL DIFFERENCE, UNDERSTAND THE IMPORTANCE OF CELEBRATING UNIQUENESS AND ALWAYS CHOOSING TO BE KIND.
named programs · 5 · from sources

What they call their work

Craniofacial Family Camp Weekends
Free, medically supported weekend camps for children with craniofacial differences and their families, offered in partnership with SeriousFun Network and Camp Chi, featuring adaptive activities and peer connection.
Support Groups
Local and online support groups connecting families affected by craniofacial conditions to share experiences and resources.
TinyFaces
Distributes newborn craniofacial care kits through partner hospitals in the Chicago area to support families at diagnosis.
Wonder Project
School-based program using the story of "Wonder" by R.J. Palacio to teach empathy, inclusivity, and anti-bullying in classrooms.
myFace Chicago
Local support program in Chicago offering community events, support groups, and resources for families navigating craniofacial differences, led by Senior Program Officer Rena Rosen.
activities · 11 groups

What they do

  • Charity Event Organization 1 activity
    • Annual community fundraising and awareness events
      Organizes the annual Races for Faces 5K walk and community celebration featuring music, raffles, a carnival, prizes, and mascot appearances to raise awareness and funds for craniofacial programs.
  • Curated Art Exhibitions and Public Displays 1 activity
    • Art and educational programming for craniofacial community
      Hosts ongoing art initiatives including a year-long collaboration with JCC Chicago and Sunrise Day Camp, and organized the “Through My Lens” photo exhibition at the Positive Exposure Gallery in NYC, showcasing personal narratives and photography from individuals with craniofacial differences.
  • Child Safety Seat and Safe Sleep Support 1 activity
    • Distribution of newborn craniofacial care kits and post-diagnosis support
      Distributes newborn care kits containing feeding supplies, burp cloths, bibs, and essential items through 59 partner hospitals across 25 states; connects families with pediatric nurse practitioners and ongoing support resources upon registration.
  • Specialized Summer Camps for Disabilities 1 activity
    • Family camp weekends and adaptive recreation
      Hosts medically supervised family camp weekends offering adaptive recreational activities such as horseback riding, swimming, arts and crafts, archery, and boating, with 24/7 access to pediatric physicians and nurses on-site to ensure safety and inclusion.
  • Recreational and Emotional Support Programs for Children with Serious Illnesses 1 activity
    • Free summer camp access for children with craniofacial differences
      Facilitates access to free summer camps, including Flying Horse Farms in Ohio, for children aged 7–21 with serious medical conditions, enabling participation in recreational and social programming.
  • Specialized Therapy for Children with Disabilities 1 activity
    • Funding and delivery of integrative craniofacial care at NYU Langone Health
      Funds and supports comprehensive, team-based craniofacial care at the myFace Center for Craniofacial Care at NYU Langone Health, including speech therapy, orthodontics, nutrition counseling, psychosocial support, medical photography, and psychological evaluations for patients and families.
  • Cancer Awareness and Education Initiatives 1 activity
    • Media and cultural advocacy for representation of craniofacial differences
      Collaborated to support the release of the Disney Junior Firebuds episode “Cleft Hood,” featuring a character with a cleft condition, to promote visibility and positive representation of craniofacial differences in children’s media.
  • Familial Support for Rare Genetic Conditions 1 activity
    • Psychosocial and family support services
      Provides prenatal and post-natal counseling, psychosocial assessments, psychological evaluations, and support groups for parents and families of individuals with craniofacial differences, including a virtual support group for Spanish-speaking parents.
  • Anti-Bullying Education and Prevention Programs 1 activity
    • School-based anti-bullying education and empathy programming
      Operates The myFace Wonder Project, delivering in-person and virtual school assemblies to over 20,000 students annually, featuring storytelling, empathy education, classroom resources, and the Upstander Pledge, with Dina Zuckerberg having reached over 100,000 students since 2016.
  • Medical Travel and Housing Support 1 activity
    • Travel, housing, and logistical support for craniofacial patients and families
      Provides travel and housing assistance to families from outside New York City, including two fully furnished family apartments in NYC, to reduce financial and logistical barriers to accessing specialized craniofacial care.
  • Uncategorized 2 activities
    • Community events and connection-building in Chicago
      Expanded services to Chicago by hiring a Senior Program Officer and organizing community events such as bowling nights, pizza nights, boat trips, Cubs games at Wrigley Field, Lincoln Park Zoo gatherings, and collaborations with Lurie Children’s Hospital and the You Are Beautiful store to foster connection among families affected by craniofacial differences.
    • Provision of educational and informational resources
      Provides parent guides, surgery guides for six common craniofacial procedures, informational webinars, a curated list of books, and maintains an updated list of scholarship opportunities to support informed decision-making and access to resources for the craniofacial community.
financials · form 990 · fy2023
revenue
Total revenue$2.99M
Contributions & grants$2.52M84%
Program service revenue$00%
Investment income$957K32%
Other revenue$-485K
expenses
Total expenses$3.61M
Program expenses76%
Admin / overhead18%
Fundraising6%
Salaries & benefits$776K
Grants paid out$1.58M
Largest expense lineCompensation
balance sheet
Total assets$34.59M
Cash$938K
Investments$31.95M
Liabilities$82K
Net assets$34.51M
Liquid reserves109.2 mo
5 years on record · 2019–2023 · YoY revenue -69.7%
leadership · form 990 part vii · fy2023

Who runs it

paid leadership · 3
NameTitleHours/wkCompensation
STEPHANIE PAUL EXECUTIVE DI 40 $241K
ANDREW NEWMAN SR DEVELOPME 40 $147K
KAREN LAZERUS DIR OF CAMPA 40 $125K
board members · 15
  • ALEXANDRA C KAY ESQ — VICE PRESIDE
  • BARBARA ZUCKERBERG — TRUSTEE
  • CHARLES BEEVER — TRUSTEE
  • CRAIG DUGAN — TREASURER
  • DAVID SANTIAGO — TRUSTEE
  • ERIN ASHAYERI — TRUSTEE
  • FREDERICK M FRIEDMAN — TRUSTEE
  • JOHN R GORDON — PRESIDENT
  • MAXWELL KAHN — TRUSTEE
  • RAVI DESAI — TRUSTEE
  • SEAN MCGOULD — TRUSTEE
  • SONDRA NEUSCHOTZ — SECRETARY
  • VINCENT DELUCA — TRUSTEE
  • VINCENT HOM — TRUSTEE
  • WILLIAM S VILLAFRANCO — INTERIM EXEC
relationships · 19

Who they work with

  • Advocate Children’s Hospital Partner — Regional partner hospital in the Chicago area.
  • Ann & Robert H. Lurie Children’s Hospital Partner — Partnered with myFace for a joint community engagement event at Lincoln Park Zoo.
  • Camp Chi Partner — Hosts one of the craniofacial family camp weekends in partnership with myFace and JCC Chicago.
  • Disney Junior Partner — Collaborated on the Firebuds episode “Cleft Hood” to promote positive representation of craniofacial differences.
  • Flying Horse Farms Partner — Partnered to provide free summer camp opportunities for children with craniofacial differences and other serious medical conditions.
  • JCC Chicago Partner — Collaborates to host a craniofacial family camp weekend at Camp Chi, providing a welcoming environment for connection and traditional camp activities.
  • JCC Chicago Partner — Partner in a year-long art and education collaboration with myFace Chicago.
  • Kips Bay Towers Partner — Hosts myFace family apartments for out-of-town patients and families.
  • Moebius Syndrome Foundation Partner — Listed as a provider of scholarship opportunities for the craniofacial community.
  • NYU Langone Health Partner — Collaborates to provide comprehensive craniofacial care through the myFace Center for Craniofacial Care.
  • NYU Langone Health Partner — Hosts the myFace Center for Craniofacial Care in New York City, providing integrative and specialized care supported by myFace.
  • Positive Exposure Gallery Partner — Hosted the "Through My Lens" photo exhibition to highlight personal narratives and experiences of the craniofacial community.
  • R.J. Palacio Partner — Inspired the creation of The myFace Wonder Project through her novel Wonder.
  • SeriousFun Children’s Network Partner — Partnership to deliver craniofacial family camp weekends with world-class facilities, adaptive programming, and on-site medical support at no cost to families.
  • Smile Train Partner — Listed as a provider of scholarship opportunities for the craniofacial community.
  • The American Cleft Palate Craniofacial Association (ACPA) Partner — Listed as a provider of scholarship opportunities for the craniofacial community.
  • The Mind Wellness Connection Partner — Provides clinical leadership and facilitation for the Spanish-speaking parents support group through its founder, Anastatia Fabris.
  • UPMC Children’s Hospital Partner — Partner hospital that receives and distributes tinyFaces craniofacial care kits to families.
  • University of Illinois Craniofacial Center of Chicago Partner — Collaborates with myFace, with medical staff participating in events.
strategies · 4

How they approach the work

Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.

  • Empathy Through Storytelling and Education
    methodology: education_through_storytelling
    By using personal storytelling, school-based programming, and children's literature to teach about facial differences, the organization fosters empathy and inclusion because direct exposure to lived experiences reduces stigma, prevents bullying, and shifts social norms around appearance.
  • Family-Centered Care Navigation and Immediate Support
    methodology: personalized care navigation
    By providing personalized care navigation and immediate support at diagnosis — including care kits and nurse practitioner guidance — the organization reduces anxiety and supports treatment continuity because early, coordinated intervention increases preparedness and family empowerment during critical decision-making periods.
  • Peer and Community-Based Support for Resilience
    methodology: peer_support
    By connecting families through peer-led support groups, shared recreational experiences, and community events, the organization reduces isolation and builds emotional resilience because shared lived experience fosters trust, belonging, and coping capacity.
  • Whole-Person Integrated Care Model
    methodology: whole-person_care
    By integrating surgical, medical, dental, and psychosocial services with peer and family support, the organization improves clinical and psychosocial outcomes because addressing the full scope of patient needs — not just medical ones — leads to better engagement, resilience, and treatment continuity.