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Connections Conference For the Win!

You’ve probably seen months of hype for our 2014 Connections Conference… and it was all for a reason!  What a fantastic day we had in Indianapolis!   The event brought a great turnout and between our fantastic keynote speakers, informative breakout sessions, and adorable therapy dog visitors, everyone left the day with big smiles.

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Connections was held at the Indianapolis Downtown Marriott and kick-started with an inspirational and entertaining keynote address by David Roche.  We were happy to have David and his wife, Marlena Blavin, join us for their third Connections Conference this year.  They are lovely people with a special heart for those affected by cleft and craniofacial conditions.  David and Marlena facilitated a workshop on the power of personal storytelling, which was a moving experience for many of our participants.  David and Marlena’s keynote comments also provided the perfect bookends to the day’s event.

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Other workshops covered a variety of topics, including:

  • Speech/language therapy for early childhood and elementary years (Theresa Snelling, MA, CCC-SLP)
  • Navigating the world of insurance and craniofacial care (Marilyn Cohen, LSLP)
  • The genetics of cleft and craniofacial issues (Howard Saal, MD)
  • What to do when people stare (Charlene Pell)
  • How to improve outcomes for children with craniofacial differences (Claudia Bellucci, MS)

Special thanks to the highly-qualified volunteers who led these workshops!  They were instructive and beneficial to all those who attended.

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Another highlight of the day was the Team Q&A Panel, where key specialty areas of a typical treatment team were represented and families had the opportunity ask questions and discuss their individual needs and concerns.  This year’s panelists included Claudia Bellucci, MS; Angela Dixon, MA, CCC-SLP; Ron Hathaway, DDS, MS, MS; Trish Severns, MA; and Isaac Wornom, MD.  A sincere round of applause to this “team” of professionals for sharing their expertise with Connections families!

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We also enjoyed a panel of individuals and families from a variety of backgrounds who shared their own personal journeys with cleft and craniofacial care.  We could go on all day about all the wonderful contributions of our program participants!

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Besides all the connections, support, and education that took place throughout the day, there was a whole lot of fun going on too!  Our children’s activity room was a busy and happy place, with everything from crafts and origami to movies and books.  Highlights of their play day included a kids’ yoga session and a visit from about 15 dogs of all sizes, who were completely content with the shower of love and excitement that came from our group (kids and adults alike!).

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All in all, Connections was a huge success.  Please visit our 2014 Photo Gallery for a peek at the good times we had.   If you attended Connections 2014, please leave us a comment here so others hear about your personal highlights from the day!   For those we missed this go-around, we hope you’ll spread the word about Connections and join us in the future!

Summer Surgery is on the Calendar

Even if school is still in session, we’re heading into Memorial Day Weekend, the official start of summer for many families.  Summer means a lot of different things to different people but if you’re the parent of a school-aged child with a cleft, your summer schedule may center around one big event: A summer surgery.

There are as many great ways to prepare for surgery as there are children and families making those plans! Building a surgery calendar is just one of many ideas but we hope it inspires you to prepare for your own experience as you and your school-age child head to the hospital–whether it’s this summer or next winter.

  • Curious George Goes to the Hospital is a long-time favorite picture book for school-aged kids. A visit to your local library will turn up other books to share with your child as he or she prepares for surgery.

    Curious George Goes to the Hospital is a long-time favorite picture book for school-aged kids. A visit to your local library will turn up other books to share with your child as he or she prepares for surgery.

    A family surgery calendar is a simple way to help your child engage and invest in his or her own experience with surgery and hospitalization. School-aged children even as young as six or seven years have begun to develop a concrete sense of time though shorts spans–a few days to a few weeks–are probably most easily understood for younger school-aged children. A calendar can be good visual aid for children as they help prepare for their surgery.

  • A few weeks prior to surgery, help your child mark the surgery date on a calendar. Stickers, markers, crayons, and tape are easy tools for kids to use as they build their calendar. Plan a few specific events leading up to the big day and add those to the calendar. Possibilities include:
    • Visiting the hospital and admissions desk
    • Choosing a special toy, blanket and or book to take along to the hospital
    • Making a packing list and/or packing for the hospital stay
    • Visiting the library to search for picture books about hospitals or surgery
  •  Make a few plans for after the surgery date and add those to the calendar. The surgery is a big deal, but it doesn’t have to take center stage. Help your child think about and look forward to life after surgery:
    • Having a friend visit your child when he or she has returned home
    • A family picnic or cookout
    • The doctor’s all-clear for your child to eat a favorite food
    • Any other activity that will help your child focus on returning to life-as-usual after surgery.

Post your family’s surgery calendar on the refrigerator or some other high-traffic area in your home (remember to keep it at kid-eye-level!).  Add to it, revise it, and highlight days as they come and go. Print a Family Surgery Calendar.

Your treatment team coordinator will have other great information about your particular hospital and what to expect before and after your child’s surgery. 

What tips and suggestion do you have to share about helping children and families prepare for surgery?

Drum Roll Please…

With big smiles and cheers, we’re thrilled to announce our

2014 Connections Conference 

for individuals and families affected by cleft lip/palate or other craniofacial conditions!!  Connections will be held March 22, 2014 in Indianapolis, Indiana and you can learn all about it here.  We hope you’ll consider joining us!

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The Cleft Palate Foundation hosts a Connections Conference every two years in different cities around the country.  This year, we’re looking forward to adventures in the MidWest with many Families of Champions (our conference theme).

Connections offers a unique mix of education, friendship, and fun and is designed for the whole family.  Some highlights of the conference include keynote addresses by David Roche and Marlena Blavin, breakout workshops covering common topics of interest, a Q&A session with treatment team specialists, and a panel of families sharing insights from their own journeys in cleft/craniofacial care.  For the kiddos, we’ll have some four-footed, furry friends stopping by, kids’ yoga and movement fun, professional storytelling, and more!  Still on the fence about coming?  Let’s throw a pizza party, wine & cheese reception (cookies & milk offered too), and Connections t-shirts into the mix!  Okay, you’ve gotta see by now why we’re a little excited for this event…  It’s only $30 for the first adult, $20 for additional adults and teens, and $10 per child to attend and you can register online.

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If you still have questions after looking through our website, please feel free to give me a call (800-24-CLEFT) or leave me a comment on this post.  Please register soon so we can plan all of the best for you!  If Indy’s a little too far this go-around, please stay tuned for future conferences in your area.  (Wouldn’t hurt to drop us a note about how great your city is too… future locations are under review!)  We love interacting with you all on social media, email, and the Cleftline, but we’d be so happy to meet you in person too.  Hope to see you at Connections 2014!

 

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We Can’t Wait to Connect in 2014!

Happy 2014 everyone!

We hope you all had a wonderful holiday, and that you are ready to read, comment, ask, answer, interact, and just generally connect with us and others here on Cleft Connection this year!

The new year is a great time to regroup and refresh so we’d like to take this opportunity to share a refresher on what exactly it is that we do here at the Cleft Palate Foundation and hopefully on how we can help you.

So let’s get started!

So what/who is the Cleft Palate Foundation?

The Cleft Palate Foundation (CPF) is a 501(c)(3) nonprofit organization founded in 1973 to be the public service arm of the American Cleft Palate-Craniofacial Association.

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Our mission is to serve individuals and families affected by cleft lip/palate and other craniofacial conditions by connecting them to team care, providing education, and offering personal support.

What does the Cleft Palate Foundation do?

We:

  1. provide information to educate patients, families, and professionals,
  2. make referrals to cleft/craniofacial treatment teams and advocate for family-centered team care,
  3. offer telephone and online support: 1-800-24-CLEFT (800-242-5338), info@cleftline.org,
  4. host the Connections Conference: for Families, Caregivers, and Patients,
  5. provide Cleftline Teddy Bears with repaired cleft lips,
  6. share stories from and for affected individuals and families,
  7. award a minimum of three $500 college scholarships each year to young adults affected by cleft and craniofacial birth defects,
  8. fund research to learn all we can about prevention and care, and
  9. award scholarships to healthcare professionals.
How can I find out more about one or more of these services and programs?

You can click on the links above for more information on the specific service or program you are interested in.

For more information on #s 1-4 above, call us at 800-24-CLEFT or email us at info@cleftline.org to speak with our Director of Family Services, Stephanie Williamson.

For more information on #s 5-9 above, call us at 919-933-9044 or email us at admin@cleftline.org to speak with our Foundation Administrator, Emily Kiser.

Questions? Comments? Just want to say hello?  Let’s connect in the comments section below!