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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.

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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

Parenting a Child with a Cleft: 10 Things Every Parent Should Know

CPF welcomes guest blogger, 20-year-old Sarah Stone. Born with a cleft lip and palate, Sarah shares some of her experiences with cleft care via her blog, Fearless Face. Sarah is a 3rd year university student in Ottawa, Ontario where she studies communication.

pix5

Sarah and her parents.

10.Your child is just like everyone else.S/he has 10 fingers, 10 toes, and 2 arms. Your child also has a smile. It just needs to be fixed.

   9. You don’t need to feel guilty. It’s not your fault and there is nothing you can do about it except be there for them. There are support groups that are available if you need to seek help. But your child probably doesn’t blame you or hasn’t even considered it. They love you just as much as you love them.

http://www.nationwidechildrens.org/cleft-lip-palate-support-group
http://www.cleftadvocate.org/ftfc.html
http://www.cleftsmile.org/#1
http://www.cleftline.org/parents-individuals/publications/support/

  8. Learn to be patient. Feeding won’t be easy and your journey will be longer than a day.

  7. Never make fun of your child’s appearance. NEVER agree with what a bully said. The “yeah, it does look like you hit your lip” isn’t going to boost their confidence.

  6. Surgeries are scary for anyone. The best thing you can do is find something that calms them. In my opinion, I love it when my mom rubs my arm before going in the surgery room, even though I’m in my 20’s. It’s comforting but distracting at the same time.

  5. Encourage your child to be active in school and extra activities. It’s easy to hide at home, but it’s more fun to be active and make friends and feel proud of yourself. Achieving something like a soccer goal or dance recital will allow them to gain confidence.

  4. If your child has a bully, it’s best NOT to go to the school and make a scene. It often makes the situation worse. The best advice my parents gave me is that people who bully often have insecurities and need to feel powerful. In my own experience, I’ve seen the same people get bullied themselves. Teach them that good people get far in life while bad will not succeed. When your child grows older,  they will see how accurate this is. They should still tell an adult about the bully, but teach them that they are better and above someone who needs to hurt other people.

  3. Don’t shut them out when they need someone to talk to. You may not want to hear it, but they do. And they need you. Thank them for opening up and expressing concerns and feelings because if they don’t trust you to listen then there will be greater problems down the road.

  2. When they are getting older, they will realize that they are different and ask questions. Repeat after me: “You were born with a birth defect. Your mouth was not completely formed when you were a baby in mom’s tummy. You are just like everyone else but will have to be stronger to overcome some hurdles.”

  1. Even if they don’t show it, they appreciate everything that you have done and given up for them.

–Sarah Stone

visit Sarah at her blog, Fearless Face