You can download a digital version of our winter newsletter here.
Thank you for allowing myFace to be Naomi’s second family.
“When I think of myFace, the first words that come to mind are acceptance and community. No matter where you’re from, who you are or what craniofacial condition you have, you have a place with myFace!”
–Naomi
Twenty-one-year-old Naomi was born with Van Der Woude Syndrome, which resulted in her having a severe bilateral cleft lip and palate, as well as a lip pit in her lower lip. Because her cleft has affected how her ears sit, she is constantly getting new ear tubes.
Naomi is grateful that she has been a part of the myFace family throughout her journey, having undergone more than twenty surgeries to date with more to come once COVID conditions improve. From the nutrition/feeding therapy, social worker support, to the speech pathologists, visiting nurses and counseling all received through the myFace Newman Family Support Center, she has experienced it all.
myFace has allowed me to connect with people who have gone through similar situations. Just being able to see people like me and talk about our unique struggles when it comes to having craniofacial conditions, has made all the difference in my life.
myFace Adult Support Group to Launch a Podcast Series
Dina Zuckerberg, myface Director of Family Programs, is working closely with members of the Adult Support Group to create and launch a unique Podcast Series in 2021. This series will inform and educate the general public about craniofacial differences and address the issues those with facial differences deal with as individuals and as a community. Sharing these stories through this podcast enables those within the craniofacial community to feel empowered by letting them know they are not alone and that someone understands. Stay tuned for our myFace Podcast Series launch!
Join Families Across the Nation for the Transforming Lives Webinar Series
The myFace Transforming Lives Webinar Series kicked off its inaugural program on November 12th. The first topic presented was The Difference a Craniofacial Care Team Can Make. Experts, Dr. Joseph McCarthy and Patricia Chibbaro, RN, both from the myFace Center for Craniofacial Care at NYU Langone, shared critical information to help families understand how to navigate the selection of medical, surgical, and psychosocial specialists. The webinar centered around what constitutes a craniofacial care team, how to find the best team and important considerations as you make your choice.
Throughout 2021, additional webinar programs will address prenatal counseling, navigating the insurance landscape, and the importance of psychosocial care. All webinars will be archived on myFace.org so families can access these important educational resources whenever they need. Follow us on social media and check myFace.org/webinars to stay informed.
Ask The Expert
Patricia Chibbaro, RN, MS, CPNP, Pediatric Nurse Practitioner myFace Center for Craniofacial Care at NYU Langone Health, New York, NY
When should I start looking for the craniofacial team if I find out from the sonogram?
When should I start looking for the craniofacial team if I find out from the sonogram?I recommend families contact a team right away. Many conditions cannot be seen on a prenatal sonogram, but for those that are, the family should get a referral to a comprehensive team immediately. In a prenatal consult they should expect to meet with the surgeon, learn how to prepare for the delivery, discuss feeding with a nutritionist, obtain resources and support from a social worker, and have an orthodontic team give an explanation about treatments that can be done even before the first surgery. These consults are invaluable for families because it gives them guidance, helps them prepare, and reassures them that there’s a light at the end of the tunnel.
How important are the psychosocial aspects of the team – nutritionist, speech therapists, psychologist?
A child with any craniofacial anomaly should initially be seen by everyone on the team. Specialists will come in and out depending on where your child is with their treatment. It is important that a psychosocial team is always available pre-, during, and post-surgery as a resource. Some families need support more than others, and there should be no judgment about who needs help, and who doesn’t. This is a journey, and that journey can go on for years.
The myFace Wonder Project
Helping Students to Choose Kindness and Put It Into Action
More than ever before, choosing kindness is critical to the wellbeing of our children and the health of our communities. As parents, caregivers, and educators, we have an obligation to promote empathy and kindness, and to teach acceptance for those with differences.
Over the past 5 years, schools across the country have been drawn to the myFace Wonder Project’s pro-compassion English Language Arts Curriculum based on the best-selling book, Wonder, by R. J. Palacio. Through participation in this program, students learn how their own choices can help shape our society today, and they are encouraged to consider how individual decisions impact the course of their fellow students’ lives.
Dina Zuckerberg, myFace Director of Family Programs, and the author of Wonder, R.J. Palacio
myFace is currently recruiting schools to join a pilot campaign where we are excited to launch a new philanthropy component – A Week of Wonder.
Students will have the opportunity to put choosing kindness into action while raising much needed funds to support our mission.
All program components can be conducted virtually or in-person and we will provide guidance on how to make the program work best for each school. Bring the Wonder Project to your school! Reach out to info@myface.org for more details.
Our Donors Make it Possible
Working in collaboration with a fellow nonprofit, Welcome Baby, myFace will launch in 2021 a new program to provide Newborn Craniofacial/Cleft Kits to mothers, containing the items they’ll need for their child in the first four weeks of life. The kit will have items such as a layette, baby carrier wrap, diapers, socks, creams, wipes, and Dr. Brown’s bottles and pacifiers, specially designed for cleft and craniofacial babies.
In addition to the normal stresses of a newborn, parents with a craniofacial baby have so much more to navigate, including breathing and feeding issues. We are excited to launch this program and take one worry off the minds of new parents with a child impacted by a craniofacial difference.
When Thoughtful Kindness Meets Opportunity
As told by Erin, a grateful mom who’s paying it forward
My son, Greyson, is a fun, silly, and happy little boy who today, at twenty months, is a smiling toddler who climbs on everything, loves trucks, playing soccer, and gives the best hugs.
But when Greyson was born, he tried to latch, but was having difficulty getting milk. The day after his birth, we were shocked to learn he had a cleft in his soft palate. All the emotions of excitement about the birth of our son soon turned to uncertainty and confusion. How were we going to be able to care for our baby when we knew nothing about cleft differences?
Fortunately, a member of the myFace Team was at our side within hours of the news. After a whirlwind of speaking with our cleft team, we were exhausted with digesting so much new information.
That’s when we were introduced to a young man who was born with a cleft lip and palate. As part of his bar mitzvah community service project, he was generously providing gift baskets to new parents filled with specialized products for cleft babies. It was only after we returned home with Greyson that we realized just how critical this basket was in the first weeks of our son’s life.
Knowing this wasn’t a long-term program for this young man, we saw an opportunity to pay it forward and help provide vital products and resources to other new parents.
A Lasting Legacy With myFace
By creating a planned gift with myFace, you can ensure that future generations of those with craniofacial differences have access to holistic comprehensive care, and are celebrated and treated with empathy, kindness, and support. Planned gifts are powerful ways to create a brighter tomorrow, often without paying anything today.
But nearly 70% of Americans don’t have an updated estate plan, and many are unaware of the power that a gift in your plans can have. If you’d like to create a lasting legacy with myFace, we have an easy way to get started.
We’ve partnered with FreeWill to provide you with an online tool so you can easily write a will, protect the people you love, and create a legacy gift with myFace — at no personal cost. Over 170,000 Americans have used this tool because it is safe and secure.
Learn more about Planned Giving
myFace Family Holiday Party Goes Virtual This Year
SAVE THE DATE: Sunday, December 20, 2020
COVID-19 may have prevented us from hosting our in-person annual craniofacial family holiday party this year, but we won’t let that stop us from celebrating with you! On Sunday, December 20th at 4pm ET we have a very special virtual event featuring the one-and-only Magic-Al! He will wow you all with his signature style of magic entertainment. The best part about this year’s party is that you don’t have to be in NYC to enjoy it.
If you are part of the craniofacial community and would like to receive an invite, please reach out directly to Dina Zuckerberg at Dina@myFace.org
