To download a PDF of the Spring 2022 Newsletter, click here.
Dear Reader,
As Spring approaches – the season of growth and renewal – we reflect on how much our organization and community have evolved, thanks to your continued generosity and support. Our mission to be a safe haven that anyone with a facial difference can turn to for medical, educational, and emotional support would not be possible without you. We are deeply grateful for all you have helped make possible, such as what you will read about in this issue of Your Impact, including:
- The courage and pluck of 5-year-old Jacob Lustberg and his family as they navigate his cleft journey.
- Raising awareness for the life-changing effect that passing the Ensuring Lasting Smiles Act (ELSA) would have on craniofacial patients and their families across the country, like Lenica and her daughter, Anibel.
- Sitting down with author Ariel Henley to learn more about her journey with Crouzon Syndrome and the inspiration for her memoir, A Face for Picasso.
- Hosting the latest Transforming Lives webinar, where we explored the effects of a cleft on early speech and language development, and strategies parents can use to encourage progress.
- The impact of a decade of R.J. Palacio’s beloved novel Wonder, which helped inspire the myFace Wonder Project, which has reached over 60,000 students across the nation.
We are excited to be able to safely gather in-person once more, and hope you will join us as we come together to share messages of hope, resilience, and community at this year’s myFace Celebrates… event on May 2nd, 2022! Learn more about this evening of musical performances and storytelling to benefit the craniofacial community at myFaceCelebrates.org.
Thank you for making what we do possible!
Stephanie Paul
Executive Director, myFace
P.S. Please consider making a donation. Your gift will provide critical education, support, and access to holistic comprehensive care – changing the lives of individuals and families impacted by craniofacial conditions – forever.
MEET JACOB: A Five-Year-Old with the Courage of a Superhero!
Here is Jacob pictured as a baby, after his first surgery, and today, in all of his superhero glory!
Jacob may only be 5 years old, but he already knows he wants to be a doctor, rockstar, astronaut, ballerina, and superherowhenhe grows up. His mom, Tara, says that even at 5, he has the personality and wisdom of an old man. Jacob is friendly, yet fearless and adventurous – and “couldn’t care less about what anyone thinks of him.”
He knows he is special, but at such a young age he doesn’t fully understand why. Jacob was born with a complete unilateral cleft lip and palate. He’s had two surgeries to repair his cleft and a third surgery for his ear tube placement. Tara said that his cleft was a complete surprise to her and her husband, Will, when Jacob was born. At first they felt lost and had no idea what to expect.
However, myFace was there for them when they needed it most.
“Jacob’s physical difference does not define who he is, but it is part of who he is.” – Tara, Jacob’s mom
Tara was unprepared to care for a newborn with feeding issues, so the special basket of supplies she received from the care team at the myFace Center for Craniofacial Care at NYU Langone Health was a real lifesaver. Furthermore, when it was time for Jacob’s surgeries, the family stayed in the myFace apartments – conveniently located near the hospital – allowing them to focus on getting Jacob the care he needed without worrying about the expense or stress of accommodations in NYC.
Jacob knows he will need more surgeries as he gets older, but he channels his superhero powers to ease any fears he might have. We are proud of you, Jacob, for being so brave, courageous, and confident!
WHY WE NEED ELSA: And Why Elsa Needs You!
As members of our community know too well, medical interventions can cause considerable financial – as well as emotional -stress. At myFace, we believe families should be able to focus on what’s most important: getting their loved ones the care they need. That’s why we’ve joined a coalition of over 50 leading organizations in the craniofacial community, including the American Cleft Palate-Craniofacial Association, the American Dental Association, and the American Society of Plastic Surgeons to advocate for the passage of the Ensuring Lasting Smiles Act (ELSA).
ELSA is an important piece of legislation that would provide more extensive healthcare coverage for medical and dental expenses related to any congenital or craniofacial anomaly, from childhood to adulthood. This bill would make a huge difference to so many of the families we serve – like Lenica and her daughter, Anibel (pictured here).
“In one instance, I had to write letters and get doctors to write letters to my insurance company explaining the urgent need for surgery to help open up Anibel’s jaw… The coverage for the procedure was finally approved and Anibel’s headaches disappeared after the surgery. But, she endured unnecessary pain. It was stressful for everyone involved.” – Lenica
Anibel was born with Nager Syndrome, and has had 36 surgeries in her short 16 years, with more to come. Recently, Anibel had a jaw abscess which eroded a tooth, and needed to undergo dental surgery. Unfortunately, Lenica’s dental insurance wouldn’t cover the procedure – leaving Anibel in pain, and leaving her mom scrambling to figure out how to pay for it.
Lenica and Anibel have also experienced numerous delays in care because of denied coverage.
If the ELSA Act is passed by Congress, it would have a huge impact on Lenica and Anibel, and other families like them. They wouldn’t have to fight so hard for necessary medical care.
“If ELSA gets passed, I could rest assured knowing that Anibel’s dental and medical needs will continue to be taken care of as she enters adulthood… The issues related to her condition will continue throughout her life, so the coverage for these issues should continue as well.” – Lenica
Join myFace and take action! Visit acpa-cpf.org/advocacy to learn more and send a pre-written letter to Congress to help get this landmark bill passed.
Ask the Experts
Pictured from left to right: Lauren Beckett, MS, CCC-SLP, Meg Lico, MS, CCC-SLP and Meg Edwards
On January 25th, myFace presented a free educational webinar as part of our Transforming Lives series that explored how a cleft palate can affect early speech and language development, and provided strategies parents can use at home to help their child progress. Below are some of the questions posed to our speakers during the live Q&A.
How can I find a speech therapist near me with lots of cleft palate experience?
L. Beckett: Reach out to the speech therapist on your craniofacial team. They are considered a cleft expert, and they will work with your treating speech therapist to ensure your child is working on the best goals. If you aren’t established with a team, you can find a nearby team to contact on the ACPA website.
How often should my child attend speech therapy?
L. Beckett: This depends on (1) what your child’s speech concerns are and (2) access to therapy. In many settings, children with cleft palate are seen once a week for speech therapy.
M. Edwards: Our son received speech therapy as often as 3 times per week. 2 sessions per week were provided through Early Intervention (EI) in New York City (although this varies from state to state). We also arranged for an additional private session each week because we thought it was so important for his development.
How long will my child need to undergo speech therapy, and at what age should we start?
M. Lico: Recent research indicates that approximately 50% to 70% of children with a cleft palate will need some speech therapy until age 5. It is child-dependent in terms of when to start and for how long it may be needed. Your craniofacial team can give you the best advice that is tailored for your child’s needs.
English is not our family’s primary language. Is it OK to raise a child with a cleft palate to be bilingual? Should we look for a speech therapist who can work with us in our native language?
M. Lico: Yes! We want to encourage any language development that will enable the child to communicate within their family and community. You should apply the same rules regarding babbling development prior to cleft palate repair to whichever language you plan to teach your child. It is also best (if possible) to find a speech therapist who can work with you and your child in your primary language, or a bilingual speech therapist if you plan on teaching your child two languages. If the speech therapist does not have prior experience with cleft palate, they can simply reach out to your craniofacial team for assistance with any cleft-specific concerns.
Facing the Truth through A Face For Picasso
Ariel Henley is the author of A Face for Picasso, a memoir about her journey with Crouzon Syndrome. By the time she had graduated high school, Ariel had already had over 60 surgeries, more than anyone should have to endure in multiple lifetimes. Writing this book was a way for her to work through the trauma of everything she had experienced. In sharing her personal story, she aims to normalize facial differences, challenge society’s definition of beauty, and educate people about the importance of facial equality.
Dina Zuckerberg, myFace’s Director of Family Programs, had the honor of interviewing Ariel on her podcast series myFace, myStory: Voices from the Craniofacial Community.
It was a deeply honest and poignant conversation. Here are some of the highlights:
On why Ariel wrote her memoir: “Living with Crouzon Syndrome and a face that was different was challenging in a lot of ways. . . There was this whole part of my identity and life experience that made me feel alone…I couldn’t go into a bookstore and find a book that I could relate to or watch a movie and see someone who looked like me…There was nowhere in the world that I could go to find people like me. That was a lot for me to come to terms with.”
On the definition of beauty: “There’s this belief that to have an asymmetrical face means you’re not beautiful, and that assumption is really hard….I like the way I look. I don’t want to change myself. I don’t want to fit someone else’s definition of beauty. To me, I am beautiful. And so that is what I would like people to understand.”
On having a community like myFace: “I think having a community like this growing up would have made a difference. The awareness, the education, the resources and the support network would have made me feel less alone.”
“Part of my journey to healing has involved coming to terms with the truth.” – Ariel
Ariel’s book is a must read. Her words are honest; her message strong. A Face for Picasso has the power to make a difference in the craniofacial community and in this world. To learn more about Ariel’s journey, listen to the full interview with Dina here.
Celebrating 10 Years of Wonder and 10 Years of Impact
R.J. Palacio’s beloved book WONDER turned 10 years old on February 14th, 2022, and myFace joined in the celebration! We recognized the power of Palacio’s story to change the way people think about differences, and launched the myFace Wonder Project in 2015, which has reached over 60,000 students to date!
We are grateful for our partnership with Random House Children’s Books for expanding the reach of this program for the 2021-2022 academic year, allowing us to connect with more students on the importance of celebrating uniqueness, being an upstander, and always choosing to be kind. Participating schools receive a virtual assembly led by Dina Zuckerberg, featuring a variety of resources and activities that encourage students to consider how individual decisions impact others, and how their choices help shape society. To bring the Wonder Project to your school, visit myface.org/Wonder.
“Through sharing my story of growing up with a facial difference and the inspirational stories of others, the myFace Wonder Project brings to life the book’s central themes of acceptance and inclusion in real, meaningful, and teachable ways to students across the country.” – Dina Zuckerberg
Want more WONDER? Check out the new, beautiful color-illustrated WONDER: ILLUSTRATED EDITION featuring over 25 pieces of original art from Tad Carpenter, an essay from R.J. Palacio reflecting on ten years of WONDER, and an introduction by myFace’s own Dina Zuckerberg. You can also listen to the WONDER episode of myFace, myStory here!
Upcoming Events!
To learn more and to RSVP today for myFace Celebrates… on May 2nd, 2022, visit myFaceCelebrates.org!
To learn more and to register today for our upcoming webinar on April 26th, 2022, visit myface.org/transitionofcare!
