myFace 2021 Impact Report

For 70 years, myFace has been dedicated to changing the faces – and transforming the lives – of children and adults with facial differences by providing access to holistic comprehensive care, education, resources and support that pave the way for better outcomes. At the heart of our approach to transforming lives and ensuring that no one in the craniofacial community ever feels alone are our three pillars of support.

GRANT SUPPORT: myFace makes grants to top-level organizations that deliver holistic comprehensive craniofacial care, such as the myFace Center for Craniofacial Care at NYU Langone Health. Embracing a team approach, patients have access to surgical, dental, psychosocial, speech, nutritional and other aspects of care that are all delivered in a coordinated fashion.

Picture of two young ladies smiling. One has black hair and one has brown hair. One is wearing a light pink shirt with a Nike headband and glasses and the other has a hooded sweat shirt that says Harvard on it. Both are outside surrounded by a group of people
Picture of two young girls with long dark brown hair, one is wearing a black shirt while the other is wearing a white shirt. Both are playing with blue play dough and cracker

DELIVERY OF DIRECT SERVICES: myFace provides direct services that meet the day-to- day needs of the craniofacial community, including our Virtual Support Groups, delivery of free Newborn Craniofacial Care Kits in partnership with fellow non- profit Welcome Baby, and complimentary flights and housing for out-of-town families seeking treatment in NYC through the myFace Apartments.

PUBLIC AWARENESS AND EDUCATION: myFace seeks to educate through our topic-specific Transforming Lives Webinar Series, workshops, and online resources like the Craniofacial Interactive Virtual Assistant (CIVA); and strives to raise critical public awareness about craniofacial differences through our student-facing Wonder Project assemblies, and our new podcast, myFace, myStory: Voices from the Craniofacial Community, where individuals can share their stories, be seen and be heard.

Picture of young teens smiling, outside in a camp setting. One row of kids is sitting down on steps while the second row is standing behind them. They are in front of a gray building that has a green and yellow sign that says Edwards Hall

GRANT SUPPORT

Your support has enabled more than 4,000 craniofacial patients and
their families to receive the care they need and deserve this year.

We are deeply proud to support the team at the myFace Center for Craniofacial Care at NYU Langone Health and their long-standing commitment to excellence through holistic comprehensive care. The funding myFace provides enables patients and families to have access to state-of-the-art medical and orthodontic treatment, speech therapy, nutrition consultations, psychosocial assessments, and psychological evaluations – all under one roof.

Picture of parents with a baby, Mother has long brown and blond hair, wearing a black dress with two green necklaces, she is holding a baby that is wearing a white onesie and a pink flower headband. The father has short brown hair, a brown and gray beard, and is wearing a blue plaid shirt

It’s because of myFace that more and more families will have the support they need through all the uncertainty. As a parent, finding out that your child has a craniofacial difference tests your strength and emotions… It can be so overwhelming. But myFace has seamlessly mapped out the cleft journey from the beginning.

– Tommy and Ashley, parents of Harlyn Rae, born with a cleft lip

Meet Scott. He’s a father, husband, talented speaking coach, avid soccer fan, and aspiring pasta chef. He has also had 39 surgeries over his 43 years to reconstruct his face. Scott was born with a severe cleft lip and palate, which caused structural issues with the right side of his face around his eye, limiting his vision, as well as hearing in his right ear. He always likes to give a shout out to his primary surgeon extraordinaire, Dr. Joseph G. McCarthy, and the myFace Center for Craniofacial Care team for the unsurpassed level of care they gave him and his family over the years. It’s one of the many reasons Scott describes himself “as resilient as they come.” For Scott, as one of the many lives myFace has transformed, we have a special place in his heart. And he, in ours.

“Whenever I come across even the word ‘myFace,’ I immediately feel a sense of deep solidarity and connection. Because of who they’ve proven themselves to be for decades now, I feel like no matter what I am going through, I am not alone. Whether they were working behind the scenes on my behalf, or playing a more direct role in supporting my family and me – they’ve always just been there and we’ve always been grateful for all of their support.”

Picture of young man wearing a light gray newsboy cap, glasses, and a dark gray shirt that says You May Say. He has a dark brown and slightly gray beard and he is smiling

DIRECT SERVICES

myFace Apartments

Occupancy in the myFace apartments is up 17% from the previous year, providing a safe haven for patients and families.

The Bacchus family, who live in Trinidad, needed a place to stay for several months in NYC while their daughter, Samara, underwent a series of complex procedures to treat a congenital melanocytic nevus on her face. We helped arrange a stay in one of our myFace Apartments – enabling the family to focus on what was most important: getting care for their daughter without the worry or expense of staying in a hotel in NYC. It also assured them they weren’t alone in their journey.

We are thrilled to share that Samara successfully finished the first phase of her treatment, and returned to Trinidad in September. She is now back to being the spirited little one her family – and everyone at myFace – have come to know and love!


We will forever be grateful to you all, for your compassion and accommodating warmth.

– Muhammed, Samara’s father

Newborn Craniofacial Care Kits

75 Newborn Craniofacial Care Kits have been distributed to 9 partnering Craniofacial Centers to date.

In February 2021, myFace launched our Newborn Craniofacial Care Kits initiative for low-income parents of a child born with a craniofacial difference in partnership with fellow nonprofit, Welcome Baby. Each kit contains essential items newborns will need in the first four weeks of life such as a layette, baby carrier wrap, diapers, socks, creams, wipes, and Dr. Brown’s bottles and pacifiers – which are specially designed for cleft and craniofacial babies.

The idea for this program came from Erin Ashayeri, a new mom whose son, Greyson, was born with a cleft palate that was not identified until after his birth. She received a similar kit at the hospital, and it proved to be a life saver as Erin navigated feeding and care in those first weeks. We are grateful to Erin and her husband for helping to launch this program that will continue to reach more families in need throughout the country.

My husband and I saw an opportunity to pay it forward and help provide vital products and resources to other new parents… I want these families to feel supported and to know they are not alone. Every parent deserves to feel confident that they can handle life with a baby who has a craniofacial difference.

– Erin, craniofacial advocate and myFace Trustee

Virtual Support Groups

60 Support Group meetings held this year. Providing a community for 85+ adolescents, adults, and parents across the country as they support each other in their craniofacial journeys.

Picture of four family members smiling togetherEnsuring that individuals impacted by craniofacial differences across the country have a place to turn for support is a core part of our work. We offer therapist-led and peer-led Parent, Adult, and Adolescent support groups to provide guidance, counsel and community for those living with craniofacial conditions and their families. They provide an environment where participants can feel safe, hopeful, and never alone.

Picture of Alyse smiling, with dark brown long hair, wearing a black zip up jacket, standing outside in a grand canyon settingTo meet Alyse is to meet someone who is passionate, creative, thoughtful, kind, and strong. She has a great sense of humor and zest for life, and is always looking to make a difference in the lives of others by helping them recognize their uniqueness and strength.

Alyse knows firsthand the importance of being strong, as at the age of 2, she was diagnosed with Rhabdomyosarcoma, a form of soft tissue cancer. Though the chemotherapy and radiation she underwent were successful in treating her cancer, the radiation affected the soft tissue and normal development of her facial bones, jaw and teeth – requiring close to a dozen surgeries to reconstruct her face.

Alyse grew up having little to no social support or resource groups to turn to for someone growing up with a facial difference. There was no “myFace” she knew of to offer her and her family the tools that could help them through her journey. Like many others in her situation, she persevered and found her inner strength to get her through the days.

Connecting with other adults who had gone through the experience of living with a facial difference was important to Alyse. And in May 2020, she came across a Facebook post which resonated with her and inspired her to reach out to myFace.

Over the past year, Alyse has been an active member of the myFace Adult Support Group and is grateful to connect with others who “simply get what it’s like,” and be able to discuss their shared similar experiences. She’s also excited to bring more awareness to the craniofacial community through our myFace, myStory podcast series and offer support to others to give
them the support she didn’t have.

Alyse knows now that there is a community out there for her and others to turn to so that no one with a craniofacial difference ever has to feel alone again.

Connecting and sharing experiences with others can bring a great amount of importance, meaning and support into the lives of many individuals and families.

By being part of the myFace community, I hope to make an impact and serve as additional support for others living with a craniofacial difference.

– Alyse

EDUCATION AND PUBLIC AWARENESS

myFace, myStory: Voices from the Craniofacial Community

Through first-hand accounts, myFace’s new monthly podcast myFace, myStory: Voices from the Craniofacial Community aims to educate the general public about living with a facial difference and the challenges faced by members of the craniofacial community.

Screenshot of YouTube video of myFace myStory with Dina Zuckerberg and guest speakers

When I was young, there was nothing like this available. There were no forums in which members of the craniofacial community could express how they were feeling. I think this podcast is one way to help people feel comfortable in their own skin.

– Patricia Simon

Our live podcast broadcasts have been viewed nearly 2,500 times across Facebook and YouTube this past year.

In the inaugural episode, The Masks We Wear, host Dina Zuckerberg leads a thought-provoking discussion addressing the masks we wear, both literally and figuratively. The group, which includes author Patricia Simon, discusses the importance of finding and using your voice, how self-love is a journey, and that there is so much bravery in being vulnerable.

myFace is committed to using this new podcast series to create community, provide a platform where individuals can have their voices heard, and let anyone with a craniofacial difference know that they are not alone.

Transforming Lives Webinar Series

To date, our four webinars have informed and empowered over 1,000 patients, caregivers, and families navigating craniofacial differences.

Our new webinar series seeks to educate the craniofacial community nationwide, bringing in experts to present on such topics as the importance of craniofacial team care, prenatal counseling, navigating the insurance landscape, psychosocial care, and more.

The second episode, “The Impact of Prenatal Diagnostics on Postnatal Care,” focuses on the moment when expectant parents first learn that their child will be born with a craniofacial condition. Excitement doesn’t have to turn into fear – this episode helps parents learn how to navigate the selection of medical, surgical, and psychosocial specialists who can best set their child up for success.

Explore past episodes and subscribe to future webinars so you never miss out!

“As a parent who found out about her baby’s cleft lip during our routine ultrasound at 20 weeks, this webinar was so important. My daughter is now 17 and unbelievably beautiful inside and out. That sense of community that was spoken about tonight has been key, and we have certainly found that community through anything we have done with myFace over the years. Thank you.” 

– Transforming Lives Webinar Participant

myFace Wonder Project

The myFace Wonder Project is an anti-bullying campaign seeking to educate students across the country on the importance of celebrating uniqueness, being an upstander, and always choosing to be kind. With statistics showing that 1 in 4 kids in the US say they’ve been regularly bullied at school, the need to teach empathy, kindness, and inclusivity is more important than ever.

Picture of young girl with shoulder length blonde hair, a collared white and brown shirt and gray eyes, smilingThe lesson I learned is that everyone is different and that no matter how they’re different, we have to respect their differences.”

– Clara, 2nd grader

10,000+ Students Have Chosen Kindness & United Against Bullying this past year!

The Wonder Project consists of a special assembly led by our dedicated myFace speakers living with a facial difference. By drawing from personal experiences, these speakers teach, inspire and bring out the best in students. They demonstrate why choosing kindness is necessary to create an environment free of bullying and exclusion, and they encourage students to launch their very own kindness campaigns throughout their classroom and school. No child should ever feel alone.

Online Resources

myFace seeks to relieve the stress and anxiety surrounding craniofacial surgery, which is why we are so proud to offer a free and innovative tool called the Craniofacial Interactive Virtual Assistant (CIVA)! CIVA provides an immersive learning experience for patients and their families to help them better prepare for nine of the most common craniofacial procedures through detailed 3D simulations, expert medical advice, and firsthand insight and advice from patients and their families who have already been through it.

To date, CIVA has helped more than 2,000 unique patients and their families prepare for surgery.

Picture of young woman with long light brown/blondish hair, wearing glasses, dangling earrings and a black and white decorative shirt. Text in image says that I wasn't the only one who had this syndrome. Screenshot of YouTube video about CIVA

We view CIVA not just as a resource for craniofacial patients and their caretakers, but also as an educational tool for the wider community. Through raising awareness, we hope to foster empathy and greater understanding among the general public about the treatment and healing process for individuals with craniofacial differences.

Explore this innovative resource today!

EMPOWERING THE COMMUNITY

On Sunday, September 19th, more than 500 people came together across the nation for our 9th Annual Races for Faces Virtual Event, celebrating differences, promoting acceptance, and bringing awareness to the craniofacial community. Thanks to everyone who helped us raise over $210,000! Our work would not be possible without you!

A special thanks to our three Grand Marshal families for sharing their stories and amplifying the important work myFace does for the craniofacial community and beyond.

Picture of Angel Jayce and his mother. Both are wearing yellow shirts that say the word smile on it. The mom is wearing earrings, while Angel Jayce has a blue collar around is neck. Both have brown hair, and they are in front of a stage with many bright lights

“It takes extra support, courage and resilience to raise a child with a craniofacial difference. By sharing our story, we give hope to others the way they’ve given us hope.”

– CarlaMarie, Team Smile with AngelJayce

Picture of young lady with long black hair and white shirt smiling, holding a sign that says I am walking for all the myFace families and every person that helps make myFace what it is

“Proper care and support and knowing that you are not alone can make all the difference in the world.”

– Lizzie, The Fu Family Team

“You are not alone. You have more people than you can realize. With myFace, you have another whole family that cares for you as much as your family does.”

– Scarlett, Team Scarlett

SAVE THE DATE for next year’s Races for Faces 10th Anniversary in-person event on Sunday, September 18, 2022!

myFace Celebrates… was a virtual experience commemorating myFace’s 70th year, where we shared messages of hope, resilience and community through musical performances and storytelling. Each of our myFace Stars was paired with a professional mentor to nurture their talent, boost their confidence, and empower them to feel that anything is possible. We are committed to always providing a platform where members of the craniofacial community can shine – from near and far – and we are so grateful to everyone who shared their stories of struggle, achievement, and the impact myFace’s community has had on their lives.

myFace aims to provide individuals and families with the support, tools, and resources they need to successfully navigate their unique craniofacial journeys. The magic of our mission lies in the tender moment when a patient or family member coping with a facial difference realizes that they are not alone, and that myFace is here for them. Thank you for joining us in this important work!

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Picture of baby in a baby carrier decorated with rose background. The baby girl is wearing a white hat and coat, has blue eyes and is smiling. Also has a purple blanket

Our deepest wish at myFace is to ensure that each member of our community knows that they are never alone. We seek to be a safe haven that anyone in the craniofacial community can turn to for medical, educational, and emotional support, no matter where they are in their journey.

myFace is committed to reaching across the country to connect and serve as many individuals and families impacted by facial differences as possible. We’ve made huge strides towards that goal thanks to YOUR commitment to the craniofacial community.

We invite you to renew your commitment again today!

At the core of myFace’s fiduciary responsibility is the commitment to be outstanding stewards of donors’ trust and ensure that administrative and fundraising costs are kept to a minimum. And that our programs have a direct impact on the individuals and families we serve.

Our 2020 audited financial statement and IRS Form 990 can be found here.

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