tentative 2016 ptn conference...

\Wednesday, July 13

6:00 – 8:00 pm Registration Desk Opens, Meet & Greet

7:30 – 8:00 pm Playroom Orientation & Sign-up (required if using playroom)

Thursday, July 14

9:00 – 12:00 pm Registration Desk Open

11:00 – 11:30 am • Committee Information Meeting • First-time Attendee Orientation • Playroom Orientation & Sign-up (required if using playroom)

12:15 – 1:15 pm Lunch Buffet

1:00 – 1:45 pm Welcome, Announcements & Keynote Address

1:00 – 5:30 pm Registration Desk Open

2:00 – 5:30 pm Playroom Open

2:00 – 3:15 pm • Sacral Nerve Stimulation – Dr. Seth Alpert • C-Diff & Entercolitis • PTN Kids/Teens – Meet & Greet

3:30 – 4:45 pm • PsychoSocial Issues for the Medically Complex Child – Allison Pellettieri, LCSW • Tethered Cord – Dr. Todd Maugans • PTN Siblings Meet & Greet

5:00 – 5:45 pm Sibling Talk for Parents – Kaydee Parker & Kaitlyn Gritts

5:00 – 6:00 pm PTN Adults Meet & Greet

6:00 – 7:00 pm Dinner Buffet

7:30 – 9:00 pm Family Game Night

Tentative 2016 PTN Conference Agenda

We have worked really hard to create an agenda that includes old favorites and new topics as well. Several of you have given some great suggestions, and we are working hard to find presenters to address them. The PTN is fortunate to have the support of many experts from around the country. Doctors, nurses, therapists, educators, and more have volunteered their time to attend our confer-

ences, almost always paying their own travel expenses. We strive to include a variety of presenters to represent a variety of disciplines and approaches from multiple viewpoints.

There are several confirmed presenters listed on the agenda, and we are working diligently to attain commitments from others. We will publicize this as soon as we are able in upcoming issues of the

PTN e-News , as well as on our website! Take a look at a few pictures of our past presenters!

While we hope this is an accurate schedule, updates may be needed based on presenter availability.

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Friday, July 15

7:30 – 11:45 am Registration Desk Open

7:30 – 8:30 am Breakfast Buffet

8:45 – 11:45 am Playroom Open

9:00 – 12:00 pm Exhibits & Swag Shop open

9:00 – 10:15 am • ARM Overview – Drs. Levitt & Avansino, • HD Overview – Drs. Langer & Goldstein • Cloaca Overview – Drs. Shaul, Breech, & Dickie • Ostomy Care 101 – Jenny Kreiss, NP

9:00 – 11:45 am PTN Kids/Teens Program – ages 8 and up

10:00 – 11:00 am Grandparent Meet & Greet

10:30 – 11:45 am • Bowel Management for Constipation – Drs. Levitt, Dickie, Allshouse, & Avansino • Bowel Management for Hypermotility – Drs. Goldstein, Shaul, & Kawaguchi • College Accommodations – Faculty from the University of Florida • Hirschprung’s Disease – How to Manage after the Pull-thru – Dr. Langer


1:15 – 5:30 pm Playroom Open

1:15 – 5:00 pm Registration Open – Exhibits & Swag Shop

1:15 – 2:30 pm • Urological Concerns – Drs. Alam & Jayanthi • Gynecological Concerns – Dr. Breech & Debbie Morse • School Accommodations - Dr. Filce

1:15 – 2:00 pm Urological Concerns for the PTN Adult – Dr. DaJusta

1:15 – 2:45 pm Colorectal Round Tables (40 minute sessions)

1:15 – 4:45 pm PTN Teens

2:30 – 3:15 pm PTN Adults – Workplace Concerns

2:45 – 5:30 pm Moms Only

3:30 – 4:15 pm PTN Adults – How to Find a Doctor who Understands

4:15 – 4:45 pm PTN Adults – Q & A with PTN Teens

5:00 – 6:00 pm PTN Adults Social


6:45 – 7:30 pm PTN Adults/Teens Q & A panel

7:30 – 9:30 pm Pool Party


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Saturday, July 16


8:30 – 11:45 am Registration Open Exhibits & Swag Shop 8 Playroom Open

9:00 – 10:15 am • Ostomy Care, part 2: Nutrition/ Blockages/Dehydration – Jenny Kreiss, NP • ACE procedures: Malone vs Cecostomy, How do I know which is right for my child? – Drs. Levitt & Frischer • Motility Issues & Nutrition: How are they related? • VACTERL Research, What’s New – Dr. Solomon

9:00 – 11:45 am PTN Siblings – ages 8 & up

9:00 – 9:45 am Ask the Doctor – Girls ages 13-15 (No Parents) – Drs. Dickie & Breech

10:00 – 10:45 am Ask the Doctor – Girls ages 16-18 (No Parents) – Drs. Dickie & Breech

10:30 – 11:45 am • Dealing with the Stress of Raising a Medically Complex Child • Neurogenic Bladder – Drs. Jayanthi & DaJusta

11:00 – 11:45 am Ask the Doctor – Boys ages 13-15 (No Parents) – Drs. Avansino & Alam


1:15 – 4:30 pm Playroom Open, Registration Desk Open

1:15 – 2:00 pm • Committee Meetings • Ask the Doctor – Boys ages 16-18 (No Parents) – Drs. Avansino & Alam

1:15 – 4:15 pm PTN Siblings Teens

1:15 – 4:15 pm Colorectal/Gynecological/HD/Urological Round Tables (40 minute sessions)

2:00 – 2:45 pm PTN Adults – Bowel Management – Dr. Allshouse

2:00 – 5:30 pm Dads Only

2:00 – 4:15 pm Mom to Mom Round Tables (40 minute sessions)

3:00 – 3:45 pm PTN Adults – Intimacy Issues

5:45 – 6:00 pm Group Photo


7:30 – 10:00 pm DJ & Dance Party

Sunday, July 17


9:15 – 10:30 am Closing Session - TBA

10:30 – 11:30 am Registration Desk Open, Final Good-byes


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Supervised Playroom

and Activities

The supervised playroom is a fun, safe place for kids of all ages. We provide arts & craft activities including markers, crayons, craft sticks, glue and all the other messy things kids love. We offer board games, decks of cards, puzzles, books and building blocks as well. We also have a TV/DVD player for children's movies. Our volunteers, teenagers and adults, offer guidance and assistance with all of the activities. We also provide snacks for the children (goldfish, graham crackers, pretzels, etc.). One of the best things about the playroom is that kids of all ages get to interact with each other. Friendships are quickly formed. The younger kids look up to the older ones and the older ones enjoy being a younger child's new buddy. It's difficult to tell the "affected" children from the siblings. They all interact together and form a mutual bond. This is often the 1st place that our children discover that they are not the "only one." We provide a parent/child sign-in sheet and ask that you leave a cell phone number. Children who require one on one attention should have an older sibling or adult remain with them in the playroom. Typically, this includes most children under the age of 3. All other children are expected to follow the main rule of "respecting others" and be able to follow directions. Parents will be required to take their own children to the restroom when needed. We ask that parents keep a cell phone on vibrate or a volunteer will come get you from the session if this is necessary.

THREE Fun Nightly Activities for the Whole Family

After a busy day of educational sessions, come unwind and have fun with all of the PTN families!

Thursday night is family game night, with activities for the whole family. Bingo and trivia are just examples of the fun for all ages. We even have prizes for our lucky winners!

Back by popular demand is the pool party! Friday night you can swim, play games, and make s’mores.

The family party on Saturday night is the highlight

of the conference for many attendees! We will dance the night away with a DJ, have fun with your

friends in a photo booth, and other fun party activities.

These are just a few of the fun things we have planned!

2016 Playroom Sponsor

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Friday is PTN Kids & Teens Day

We have sessions planned JUST for PTN Kids and PTN Teens. How do you talk to your friends about your condition? Why won’t your parents stop treating you like a baby? How do you get through the school day? What do you need to think about before going to college? And, just WHAT is going on with your body? The morning is designed for ALL PTN kids and teens ages 8 and up. In the afternoon, the PTN kids go back to the playroom and the PTN teens continue with an afternoon of activities just for them. Topics include success at school, caring for yourself, and others. The “Ask the Doctor” sessions for girls and sessions for boys with the doctors and no parents allowed!

Time for PTN Adults

PTN adults have many opportunities to not only participate in educational sessions, but also network with other adults with similar conditions.

We also love when our PTN Adults have time to talk to our younger participants and their parents. We appreciate your willingness to share honestly about your successes as well as bumps in the road! This year will bring expanded offerings just for PTN Adults during the educational sessions. And, as always, the PTN Adults’ Social is fun.

Saturday is for Siblings

We would never forget about our PTN Siblings. Growing up with a brother or sister with medical challenges can be interesting for sure. Do you have questions? How about good ideas? Or do you just want to talk to other kids who know what it’s like to have a sibling like yours? Friday is your day. All PTN siblings ages 8 and up are invited to attend the morning sessions, and PTN siblings who are teens can stay the whole day. Come learn how to take care of yourself while being a good brother or sister.

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tentative 2016 ptn conference...

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