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Dear Reader,
Happy New Year! As we enter 2023, I reflect with gratitude on how much you make possible. In this issue of the myFace | YOUR IMPACT newsletter, we aim to showcase how your support makes a critical difference in our community each day. I invite you to read about some of the 2022 highlights that came to life because of you.
- Emily, a young woman who was inspired by our Newborn Craniofacial Care Kit Program, has chosen to give back to the myFace community for her Mitzvah Project.
- The annual myFace Holiday Party brought cheer to 200 kids and parents, and provided a space for those with craniofacial differences to celebrate being their unique selves.
- Throughout the year, the myFace Family Apartment Program welcomes dozens of families for apartment stays while they receive medical treatment, like Dara and her mom.
- The myFace Wonder Project brings messages of kindness, inclusion, and being an Upstander against bullying to a new generation of students at Pleasantville Middle School.
- October’s Transforming Lives webinar provided answers to questions that explored the Management of Hearing Loss Associated with Cleft Lip/Palate and Other Craniofacial Conditions.
As I look to 2023 and beyond, I know there is much to be accomplished. Together, we can make a lasting impact on individuals with facial differences and their families – ensuring that they have the resources they need to thrive and know they are never alone.
Thank you for making what we do possible!
Stephanie Paul
Executive Director, myFace
P.S. If you can, please consider giving a gift to myFace to provide education, support, and access to holistic comprehensive care for individuals with facial differences and their families. With my appreciation!
OY TO THE WORLD: A Mitzvah Project to Help Families in Need
Meet Emily. She’s a smart and talented 7th grader. Her favorite subject is math and she loves to sing in her school’s musicals and acapella group. What also makes Emily special is her unbeatable smile, regardless of being born with a cleft lip and palate.Approximately 1 in 700 babies in the world are born with a cleft each year, which can cause difficulties eating, breathing, hearing, and speaking.
Emily was fortunate to have had her surgeries performed by Dr. David Staffenberg – first when he was part of the team at the Children’s Hospital at Montefiore (CHAM), and then later when he moved to the myFace Center for Craniofacial Care at NYU Langone Health – where she continued her care. And while now all that remains is a barely visible scar above her lip, she recalls her mom telling her how the specially designed cleft bottles she used to feed Emily during the first year of her life made all the difference in the world.
Now that she’s 12 years old and becoming a Bat Mitzvah, Emily wanted to do something deeply personal and meaningful, and give back to the community that helped her and her family when they needed it most.
She found that the myFace Newborn Craniofacial Care Kit program was a perfect project as it helps families with limited financial resources receive the items they need to care for their babies born with a cleft. The kits include everything needed for the first month of a baby’s life, including those specially designed bottles that helped Emily and her parents twelve years ago.
Knowing that compassion, giving to those in need, and making the world a better place is a “mitzvah,” Emily was inspired to dedicate her Mitzvah Project to support myFace.
So far, Emily has raised close to $1,400 from family and friends who were inspired to support her efforts – enough to provide 8 newborn care kits! She told us that even people that she didn’t know directly were moved by her story and wanted to help by making a donation. Mazel Tov, Emily! We applaud your thoughtfulness and compassion, and your desire to do what you can to make this world a better place.
If you are planning a Mitzvah Project of your own or a special fundraiser, please contact Karen Lazarus, Director of Campaign Development, at Karen@myFace.org or 917-720-4715. To learn more about the program or to make a donation, visit www.myface.org/carekits.
THE MYFACE ANNUAL HOLIDAY PARTY: Where Kids Get to Celebrate Being Themselves
For most kids, the idea of going to see Santa Claus is what dreams are made of. But for children with facial differences, going to a mall to sit on Santa’s lap means getting stared at and often feeling like an outsider. That is why myFace hosts an annual holiday party for our children and families – to provide a safe and festive place to celebrate together – but more importantly, a place where each and every member of the craniofacial community can celebrate their unique selves.
On December 8th, nearly 200 members of the myFace Family gathered together, including kids with facial differences and their families, medical and dental students, staff, our Board of Trustees, and of course, Santa!
It was such a heartfelt community event, and we are so thankful to everyone who helped make it so special. Like our friends Nikki and Ben Kaufman – parents of a child with a craniofacial condition – who generously hosted our party at their Columbus Circle CAMP store and provided fun arts and crafts activities. Thanks to Michael Muoio of Villa Rustica Pizzeria and Trattoria (who also has a child with a facial difference), the families dined together before meeting Santa.
Because of the outpouring of volunteer support, each child took home a wrapped present to put under their tree. Special thanks goes to Massimo Sheinin, a 14-year-old from NJ born with a cleft lip; NYU Medical Student Sofia Perez Otero; students from NYU Dental School; members of the Oral Maxillofacial Surgery Society; fellow nonprofit UNITY SME; and the CARES Committee at The Kips Bay Towers – home of myFace headquarters!
We are still feeling warm and fuzzy over a month later, and will continue to reflect on the generosity of our community until we gather together again next year.
To see more photos of the event, visit myFace.org/gallery/holidayparty2022.
THE MYFACE FAMILY APARTMENTS: Just One of the Many Resources We Offer to Our Community
Meet Dara, a 4th grader from CT who loves doing gymnastics, playing the bass, telling knock knock jokes, and studying science (specifically geology). Dara was also born with a cleft lip and palate, and has been a patient at the myFace Center for Craniofacial Care at NYU since she was just four days old. Dara and her parents recently stayed at the myFace Family Apartments when she came to NYC to undergo closure of a fistula (an opening) in her palate – a complication sometimes associated with cleft palate repair.
Over the years, Dara has grown to be very confident and talkative. She has learned how to advocate for herself; and readily explains her condition to classmates when asked. Dara’s mother, Ann-Marie, encourages other members of the craniofacial community to take advantage of all of the resources myFace has to offer, saying:
“Although having a child with a craniofacial condition may be challenging at times, it is important to remember the tremendous array of resources we have through myFace. The apartments are just one of them. myFace has truly been there every step of the way – providing both physical and emotional support – which has empowered and prepared Dara and our family to tackle anything that comes our way.”
THE MYFACE WONDER PROJECT: Inspiring A New Generation at Pleasantville Middle School
Each year, myFace brings the Wonder Project to thousands of students across the country (both virtually and in person) to spread messages of kindness and how to be an Upstander against bullying. A recent Wonder Project assembly was particularly special for Dina Zuckerberg, myFace Director of Family Programs, who was invited to meet 150 5th grade students at Pleasantville Middle School. She was invited by Colleen Sullivan, president of the school’s Special Education PTA (SEPTA); and parent of Aidan, now 21, who was born with Goldenhar Syndrome and developmental delays. Aidan has been a patient at the myFace Center for Craniofacial Care at NYU Langone Health since birth.
Colleen was thrilled when her younger daughter Kaylee read R.J. Palacio’s book WONDER when she was a student at Pleasantville, the book on which the Wonder Project is based. The book’s main character, Auggie, was particularly special for Kaylee, as he gave her a deeper understanding of her brother’s experiences. Seeing firsthand how the book’s themes of compassion, empathy, acceptance and inclusion affect readers, Colleen was eager to bring WONDER to a new generation of Pleasantville students.
“I wanted Dina to come to our community and share her journey with the kids, and talk about the obstacles that she and other people with craniofacial differences – like my son – must navigate and overcome on a daily basis. The my- Face Wonder Project helps students, like my daughter, take the lessons from the book and apply them in real life. It was a pleasure and honor to bring this program to my community’s school!” – Colleen
ASK THE EXPERTS: Q & A
In October 2022, myFace presented a webinar on the Management of Hearing Loss Associated with Cleft Lip/Palate and Other Craniofacial Conditions as part of our free Transforming Lives series. Here are some of the questions posed during the program:
Q: My son doesn’t want to wear his hearing aid. Do you have any suggestions to help overcome this?
Dr. Zanders: We see this a lot, as kids often don’t want to stand out or appear different. It may be helpful for him to meet another child who wears a hearing aid, and shares similar experiences. Ask your audiologist if they have a social/support group or family gathering. Also, it may help for the audiologist to demonstrate to him that he is able to hear better with his hearing aid versus without it. I also encourage families to make using a hearing aid a positive experience, and give their child some ownership over their hearing aids. It can also be great to connect with the school teacher and/or audiologist to provide additional support for their child as well.
Courtney: We had this experience with Austin. We tried to be positive and encouraging, rather than getting on his case about it. For example, we would let him know that he was missing out on fun things – like invitations to parties – because he couldn’t hear those conversations if he wasn’t wearing his hearing aid. That helped. And once he started using the Frequency Modulated (FM) system, he actually began to appreciate his assistive listening devices.
Q for Courtney – What factors tipped your decision towards undergoing surgery?
Courtney: Even with the hearing aid and FM system, Austin was still missing out on a lot. After investigating different surgical options, we sat Austin down and said “This is what we’re thinking – how do you feel about this?” We had developed a lot of trust in Dr. Bly. Austin had to undergo 2 major surgeries, but his hearing was dramatically improved by this approach.
Dr. Bly: I try to give families the information they need about available hearing devices and implants – as well as potential surgical options – so that they are empowered to make the best decision for their child. A lot of hearing devices are FDA approved for ages 5 and up, so age 5 is the time when we order a computerized tomography (CT) scan and start to consider the various options.
Q for Courtney: What have you done to advocate for your Austin?
Courtney: We started Early Intervention as soon as possible, in Austin’s Pre-K program. We also set up an Individualized Education Program (IEP) plan as soon as possible. This included some self-advocacy goals for Austin, so that he could learn to advocate for himself. I’ve also worked hard to build a good relationship with his school.
Q for Austin: How was your hearing improved by the surgery?
Austin: After taking just a step outside, I felt like a new person! I could hear things the most clearly I ever have. I felt like the world just said “hello” to me, and welcomed me in.
All Transforming Lives webinars are archived and available to view on myFace.org/transforminglives.
THE FIGHT FOR ELSA WILL CONTINUE IN 2023
myFace, along with a broad coalition of 70+ national health care professional and patient advocacy organizations, took part in a number of advocacy initiatives led by the National Foundation of Ectodermal Dysplasias (NFED) throughout 2022 to advocate for the passage of an important piece of legislation: the Ensuring Lasting Smiles Act (ELSA).
Unfortunately, despite being passed in the House of Representatives with 310 votes on April 4th, 2022 – and gaining 62 sponsors/cosponsors in the Senate – ELSA was not ultimately passed into law in the 117th Congress that ended on January 3rd, 2023.
The goal of ELSA is to close health insurance loopholes that currently prevent individuals born with congenital and craniofacial anomalies from getting the coverage they need for medically necessary treatments and procedures, and to guarantee comprehensive coverage for these individuals from birth through adulthood. This piece of legislation would be a game changer for individuals with facial differences and their families, and myFace will not stop fighting until it is passed into law.
Although we are disappointed with this outcome, our work on this front will continue. We made a lot of progress building bipartisan support for ELSA this year, which we hope to expand upon in 2023. We are so grateful to each and every one of you who joined in our advocacy efforts throughout the past year, and will be in touch again soon with further updates as the fight for ELSA continues! To join our advocacy efforts, visit myFace.org/ELSA.
UPCOMING EVENTS: Mark your Calendars
To learn more about the upcoming webinar on February 13th, 2023, visit myFace.org/CraniosynostisWebinar and register today!
We look forward to seeing you at myFace Celebrates… on Monday, May 15th. Please mark your calendar to join us either in person at the Edison Ballroom in NYC or virtually through our live broadcast! More information to come.
