Cleft Palate Foundation

CPF Blog: Cleft Connection

An Interview with Stacy Keach

The Cleft Palate Foundation appreciates Stacy Keach providing this special interview in honor of National Cleft & Craniofacial Awareness Month. Thank you, Stacy!

SK5CPF: If you had just met someone hearing your name for the first time, how would you introduce yourself? 

Stacy: I would say that I’m an actor, a composer, and a voice-over artist. I would reference American Greed as a show I have been narrating for the past 11 years.

CPF: What form of facial difference were you born with?  How many related surgeries have you had? What were the most challenging and rewarding stages of cleft care for you?

SK1

Stacy: I was born with a cleft lip and a partial cleft palate. I had four surgeries as a child: shortly after birth, at six months, then at a year and a half, and finally, at four years of age. The most challenging aspect of my young life was dealing with kids who teased me. This actually strengthened my resolve to succeed in sports, in academics, and as a young performer.  I took speech therapy to help reduce the nasal sound of my speech.

CPF: What has inspired you to push through challenges in your cleft care journey?  How has a team of cleft care specialists and support from family and friends helped along the way?

Stacy: There is no better support than parents. Friends are important as well, and doctors. My dear parents instilled the notion in me that I was special. Yes, I was different than other kids, but in many ways, that became a badge of honor.

Stacy with his dad and brother.

Stacy with his dad and brother.

CPF: Tell us a little about your career path so far. What accomplishments are you most proud of?  What do you look forward to in the future?

SK3_cropStacy: I have been very fortunate in my career. I have always loved the theatre, especially Shakespeare, and I am proud to say that I have had the honor and privilege to play many of his major roles. I had a great success playing King Lear, and I am looking forward to reviving that in the not-too-distant future.

CPF: Who has been the biggest influence on your life?  What lessons did that person teach you?

Stacy: My parents were my greatest influence. I also had a professor in college, William Oliver, at the University of California, Berkeley.  He, along with my parents, gave me the confidence to pursue my dream of becoming the best possible actor in whatever medium I chose to pursue: film, TV, voiceovers.

SK7

CPF: How has having a cleft impacted the way you view the world?

Stacy: I am very sympathetic to families impacted by craniofacial issues, especially with regard to dealing with kids who tease, with speech impediments, with impaired looks. The message is constant and clear: Use whatever talent you discover you have to offset any negativity coming your way.  Let your ‘special circumstances’ become a motor to achieve greatness in whatever field you choose to pursue.

SK2

CPF: You’ve spent time in the public spotlight. Are you always comfortable with your appearance?  How do you handle the times when you notice your facial difference?

Stacy: As an actor, I am forever dealing with whether or not I want my scar to show, or do I want to hide it under a mustache? Over the years, I have generally wanted to have the scar showing if I’m playing tough guys or vulnerable roles, where it becomes important not to ‘hide’.  I’m just getting ready to play an Italian mobster, and I’m definitely going to play him without a mustache… but then, I am so giving him pale blue eyes (special contacts) and a gold tooth (special denture).

CPF: What else would you like the cleft-craniofacial community to know?

Stacy: I would like the craniofacial community to know that there is always a way for those of us born with defects to show another side of our personality that diminishes the importance or the stigma of being ‘different.’

SK4

Miracle Flights Puts Care in the Air

Is that my ride? courtesy, Miracle Flights for Kids

Is that my ride?
courtesy, Miracle Flights for Kids

Yesterday, our Director of Operations, Stephanie Williamson, enjoyed a conversation with Rasalie Perera, one of the good folks at the welfare flight organization,  Miracle Flights. Rasalie was excited to share news and updates about the organization and its services.

If you’re not familiar, Miracle Flights is a non-profit organization that provides flight assistant anywhere in the US for kids  in need of distant  medical care. Rasalie tells us that the organization has recently reinstituted its international flight program as well.

  • Roundtrip medical flight to facilities for second opinions, treatment and/or follow-up;
  • Roundtrip service dog training flight  to train with and retrieve a new service dog and for recurrent training needs;
  • Roundtrip flight for blood/organ donors assisting treatment;
  • Flights are on commercial airlines;
  • Flights are offered as many times as needed;
  • Services are not limited to a specific disease or condition.

Learn more about Miracle Flights here. Make a memorial, honorarium, or other gift here.

.

Connections to be rescheduled

It was a tough call and we’re more than a little disappointed but we’ve cancelled the October 3 Connections in Chapel Hill.

Why?

Well, the timing didn’t seem to work for many folks. Probably back-to-school busy-ness and other commitments have schedules packed. And like any good party, Connections is only fun if a bunch of folks show up. Much of the day’s programming–team panel, family panel, kids’ gatherings, round-table discussions–depends on lots of conversation, give-and-take, and shared experiences and you need a big bunch of people to make those things happen.

We’re working hard to figure out a spring or early summer date that might work better. When’s a good time of year for you or your family to participate in a Saturday event like Connections? We’d love to hear your thoughts!

Program details for Connections, October 3 in Chapel Hill, NC!

 Connections to be rescheduled! October 3 event cancelled.

 

 

8:00-8:45am

registration and check in

North Atrium

 

Kids at Connections 2014, Indianapolis, enjoyed dance, yoga and movement activities.

8:00am-3:30pm

Children’s Day

Magnolia

Terra Hodge, MSW, LCAS, LCSW-A, Connections Children’s Coordinator

Volunteers from National Student Speech Hearing Language Association (NSSHLA), Children’s Leaders

Look forward to children’s activities throughout the day, including kids’ yoga and a visit from some four-legged, furry friends!  Children ages 2-10 are invited to participate in these fun events any time after 8:00am on Saturday.  Infants are welcome to stay with their parents during conference sessions.  Teens ages 11 and up are encouraged to join us for the conference sessions listed below. All children are welcome to join their parents as needed.

 

8:45 am

Welcome

Dogwood

Marilyn Cohen, LSLP, President, The Cleft Palate Foundation

and

Virginia Hinton, Ph.D., CCC-SLP, Associate Professor, University of North Carolina Greensboro, Connections Moderator

 

Questions for the team panel, Connections 2014, Indianapolis.

9:00-9:15 am

Join the Team

Dogwood

Moderator: Dr. Virginia A. Hinton PhD

A team of cleft and craniofacial professionals field your questions about various aspects of team care, emphasizing your role as part of the team. We are pleased to welcome experienced, family-centered professionals to the panel including:

Dr. Amelia F. Drake MD

Ms. Lynn M. Fox MA, MEd, CCC-SLP

Dr. Luiz A. Pimenta DDS, PhD

Dr. Margot B. Stein PhD

10:15-10:30am

Morning Stretch and Snack

Center Atrium

Enjoy a short stretch and light snack including coffee, juice, pastries and fruit.

 

Families-123

10:30-11:20 am

Around the Table, Session I

Please note Around the Table, Session I, 1:30-2:30 pm

Join group discussions focusing on topics that are most important to you! Each group will meet twice, so you’ll have opportunity to join in two discussions around the table. Session I here and Session II 1:30-2:20pm. Around the Table conversations include:

Genetics of Clefts and Craniofacial Birth Differencefacilitated by Arthur Aylsworth, MD Azalea B

Navigating the World of Insurance and Craniofacial Care facilitated by Marilyn Cohen, LSLP   Dogwood

Speech and Language Therapy for the Infant, Toddler and Preschooler facilitated by Lynn Fox, MA, MEd, CCC-SLP   Mountain Laurel A

Speech and Language Therapy and Resources for the School-Age Child facilitated by Katy Hufnagle, MS   Mountain Laurel B

Navigating School Life and Peer Experience facilitated by Margot B. Stein PhD   Azalea A

Families-56

11:30 am-12:30 pm

Voices of Experience

Dogwood

Moderator: Silvia Blemker, PhD

This panel of families and individuals affected by clefts or other craniofacial birth differences generously share their experiences and respond to your questions and concerns managing life and craniofacial care.

 

12:30-1:30 pm

Lunch

Trillium

Grab your kids from the children’s area and meet in the Trillium Dining Hall for a casual lunch and chance to connect with other families and professionals. Leaders will welcome your children back in the children’s area after lunch and as early as 1:15pm.

1:30-2:30 pm

Around the Table, Session II

Join group discussions focusing on topics that are most important to you! This is the second of two sessions, Session II here and Session I earlier in the day, 10:30-11:20 am. Please find a listing of those groups above.

2:30-3:00 pm

Closing Connection

Dogwood

Marilyn Cohen, LSLP, President, The Cleft Palate Foundation

and

Virginia Hinton, PhD, CCC-SLP, Associate Professor, University of North Carolina Greensboro and Connections Moderator

3:00-3:30 pm

Reception and Farewells

Center Atrium

Please collect children from the children’s area and enjoy afternoon refreshments and final conversations before saying goodbye.

Looking for hotels for your Connections Visit?

 Connections to be rescheduled!

October 3 event cancelled.

 

 

Looking for a hotel for your Connections travel? There are many hotels within easy commuting distance to the Friday Center. A few of the nearest ones include:

Find more info about Connections here or go straight to registration here.

 

CONNECTIONS: A CONFERENCE FOR PATIENTS AND FAMILIES Join us OCTOBER 3, 2015 in Chapel Hill, NC!

 Connections to be rescheduled!

October 3 event cancelled.

 

 

Looking for hotels for your Connections travel? Scroll to the bottom of the page to get started!

We are so pleased and excited to announce that this fall we’ll be hosting Connections: A Conference for Patients and Families in our hometown, Chapel Hill, NC at The William and Ida Friday Center for Continuing Education. The Connections conference is a full-day education and support event:

  • Voices Of Experience family panel
  • Treatment team Q & A
  • Workshops on key topics
  • Children’s activities including dance, yoga & movement class, visits by therapy dogs, art projects and story-telling
  • Informal lunch chats with others affected by craniofacial birth differences

Connections is always an amazing event but depends on parent, family, patient participation to make it great. Join us!

Join us in Chapel Hill on October 3! If you don’t live in the Raleigh/Durham, Chapel Hill area, we’re still probably closer than you think:

  • Richmond, VA 2hrs, 45 mins
  • Greensboro, NC 55 mins
  • Charlotte, NC 2 hrs, 15 mins
  • Asheville, NC 3 hrs 15 mins
  • Greenville, SC 3 hrs, 40 mins
  • Columbia, SC 3 hrs 40 mins

There are many hotels within easy commuting distance to the Friday Center. A few of the nearest ones include:

 

A Good Question: More surgery when I get older?

“More surgery when I get older?” We recently received this great question from a twenty-something with repaired cleft lip and palate.

Information for Adults

Information for Adults

Repaired clefts of the palates often age very well and remain intact and healthy for many decades. However, as the body changes with age, additional cleft care and revision may be needed to support the health and function of the repair. In addition to care of the palate, adults with repaired clefts may also need care for loose teeth that don’t have the bone support needed to remain healthy throughout the lifespan.

Here at CPF we hear from many adults who are searching for cleft specialists who care for adults patients. We help connect them with an appropriate cleft palate treatment team or specialist in their area.  For more information about adult cleft care, take a look at our booklet Information for Adults.

End-of-year giving?

Please count CPF among your favorite charities!

As these final days of 2014 unfold, please consider an end-of-year gift to your favorite charities including Cleft Palate Foundation.

Four members of the Horner family.

A few members of the extended Horner family, making holiday giving a family tradition.

Yours is a gift that gives patients and families support and information throughout the year. Consider making your gift in honor of family members, teachers, counselors, or your favorite speech therapist, nurse, or other cleft-care specialist.

In 2009, my extended family decided to start a new Christmas tradition.  Rather than exchanging names and gifts, we would make a donation to a special charity or organization. –Sarah Horner

Be inspired by the creative giving activities of some of CPF’s donors, including the Horner family and their Christmas giving tradition. http://www.cleftline.org/donate/donor-spotlight/

 

Family, Friends, and Finding Nemo

Thanksgiving Wishes from CPF

Every year, during our biennial Connections Conference for Patients and Families, there’s a showing of Finding Nemo.  After lunch, with the lights low, the kids scatter across the carpet with dozens of pillows and blankets and settle in for a story from the deep blue.

Family and friends swimming along together. Happy Thanksgiving from CPF!

When we first started showing the film, we had a really good reason:  The story of a brilliant clown-fish with a birth difference (one of Nemo’s fins is smaller than the other) who goes out into the world with confidence, joy, and courage is obviously a great story to share with kids who are doing the same thing.

That’s a good reason, right?

But when we talked with kids about the film and asked, “what was this story about?” we only sometimes heard mention of Nemo’s birth difference, the smaller fin. More often, kids told us that the story was about a fish (or Nemo, or a kid) who gets lost and his friends help him find his dad (or get home). To the kids, the smaller fin is a small detail. It’s not the big story. What’s the big story? It’s a story about a supportive community helping out a few of its members, Nemo and his dad, Marlin.

We still show Finding Nemo but our really good reason is revised and expanded: The story of a brilliant clown-fish with a birth difference whose family and friends help him go out into the world with confidence, joy and courage is obviously a great story to share with kids who are doing the same thing.

And this Thanksgiving, that’s where our wishes and thanks to you begin:

 We wish you time among family and friends who help you go out into the world with confidence, joy and courage.

We wish you great sharing, of small details and big stories.

We thank you for including us among your friends and for sharing your stories with us.

Crush the Sea Turtle says to his son, Squirt, “You so totally rock!” That’s exactly how we feel about you, too.

From all of us at CPF, happy, happy Thanksgiving.

CPF’s New Arrival

Prenatal Diagnosis of Cleft Lip and Cleft Palate, the newest addition to CPF’s collection of booklets and fact sheets, arrived Tuesday, November 11! Take a peek here or request a printed copy here.

CPF's new arrival: Prenatal Diagnosis of Cleft Lip and Cleft Palate

CPF’s new arrival: Prenatal Diagnosis of Cleft Lip and Cleft Palate

At only 12 pages, it’s a little booklet with some big goals. We hope it will help families:

• better understand what a prenatal diagnosis is;

• make informed decisions during pregnancy;

• prepare for the birth of a baby with a cleft lip or cleft palate;

• understand why working with a cleft palate treatment team is important.

My first days at CPF were filled with phone calls and emails from new parents, often only a few hours or a few days after the births of their sons or daughters. That was 2006, when learning about feeding an infant with a cleft, cleft treatment teams, and cleft care and repair still only happened after baby’s birth, not before. And that’s how CPF has pursued its mission since 1973: meeting and supporting families only after the birth of a child with a cleft.

These days, advances in technology, particularly in the area of ultrasound imaging, increasingly help families and health professionals identify and prepare for baby’s birth differences, including clefts. Many of today’s phone calls and emails will come from parents expecting a baby with a cleft, sometimes as early as week 20 of pregnancy!

Stephanie Williamson, Director of Family Services for CPF, is excited to add Prenatal Diagnosis of Cleft Lip and Cleft Palate to the CPF collection of booklets and fact sheets.

Stephanie Williamson, Director of Family Services for CPF, is excited to add Prenatal Diagnosis of Cleft Lip  and Cleft Palate to the CPF collection of booklets and fact sheets.

The prenatal diagnosis of clefts is a tremendous opportunity for families to learn about feeding, treatment teams, and cleft care and repair–before baby’s arrival. Our hope is that when the due date finally rolls around, families will feel confident, optimistic and excited about welcoming their newest member.

Whether it’s a prenatal diagnosis, a delivery-room surprise, or any other cleft care question that may pop up for toddlers, teens, or adults, we’re always just a phone call (1.800.242.5338) or email away.

–LGW