13th Annual Myrtle Beach Apert International family retreat

The Crown Reef is the place to be in June 2011!

Re:  Families of Children and Adults With Apert Syndrome
         8 Day Family Retreat

Dates: June 10th through June 17th 2011

Place: Crown Reef Resort
2913 South Ocean Blvd. 
Myrtle Beach, SC 29577

Apert Syndrome is a congenital birth defect that affects only 1 in 160,000 individuals. It is so rare that it is often difficult to meet other affected families. Apert Syndrome involves fusion of the fingers and toes, premature cranial fusion, midface retrusion, various degrees of brain anomalies and other internal/external abnormalities. Children often undergo twenty or more surgeries in their first few years to correct these problems.

This retreat will help families of children and adults with Apert Syndrome to meet one another and to discuss recent breakthroughs in surgeries, share experiences and to gain general knowledge of this rare syndrome. The focus of the retreat will be directed towards dealing with everyday life problems and situations - a perspective that is overlooked by the medical profession.  To our knowledge, our group is the largest in the world of individuals with Apert Syndrome and their families. This retreat is very important to all of us, since Apert is so rare. It is a wonderful opportunity to share and learn from experiences of others, as well as feel a sense of belonging with someone else whom has "walked in our shoes". We can also teach and give hope to those who have just joined our wonderful Apert family.

Our organization, www.apert.org, is the largest online support network for Apert Syndrome in the world.

There is no registration fee; however, attendees will be responsible for their own travel costs, accommodations and meals. Please make your reservations directly through the hotel.  Please let me know if you make a reservation!!

Reservations for the Crown Reef: (843) 626-8077 or toll free (877) 435-9125

Use the group number  5255 . This group number will assure us of getting in the same block of rooms. You will need a credit card to pay for your first nights stay as a deposit. If you need to send a check, ask on their policy.

Rates:

Room Type

   Midweek Rate      

Oceanfront Queen Deluxe

 $119  

Oceanfront Queen Efficiency $129
Oceanfront Queen Deluxe Suite                $139
Oceanfront King Jacuzzi Suite $149
Oceanfront Queen Jacuzzi Suite $149

Rates are based on double occupancy.  Only one parking pass will be issued per room.  Check in time is 3pm, check out time is 11am.  A 13% occupancy tax and Resort Fees apply on above rates.  Deposits are refundable with a 14 day notice and a $25 fee.  Three day minimum on each reservation and no refund for early departure.  Please let me know if you make reservations!!

Other hotels

The Tropical Seas South, which is next door to the Crown Reef   - (800) 438-5015

The Mystic Seas   -   (800) 443-7050  Located at 2105 S. Ocean Blvd. (8 blocks from CR)

Red Roof Inn on Highway 17 and 29th Ave. South.  This hotel is one block off the ocean and within sight of the Crown Reef.  The phone number to that hotel is (843) 626-4444.  

You can also visit www.myrtlebeachlive.com , Myrtle Beach Connections or Sunny Day Guide for more information on the area and other hotel options.  If you do not stay at the Crown Reef, you are still welcome to come hang out by the pools with us or the beach.  The only stipulation, is that you park your car across the street at the conference center and not in the parking garage intended for those registered. 

I would also highly recommend renting a car, if you are flying in for the week.  There is so much to do in the area and you might want to see the sights.  There is a shuttle bus stop a few blocks down from the Crown Reef and I heard it takes about 2 hours to get to Broadway at the Beach, because of all the other stops it makes.  Taxis are also available in the area.

The efficiency hotel rooms are nice if you are planning on staying for a few days or all week, since they have kitchens.  There are grocery stores and two Super Wal-Mart stores nearby.

Itinerary

Friday, June 10th - welcome get together, very casual, meet all the families - at the hotel down by the pool or on the beach after you check in.  Let's try to get together in the evening, before sunset to get group shots on the beach.

Saturday, June 11th - Open

Sunday, June 12th - Pizza party!!  We will have the pizza party across the street at the Conference Center.  The Crown Reef has given us this space at no charge!!!  Thank you Crown Reef!

Monday, June 13th -
Build A Bear Workshop 9am at Broadway at the Beach!!

Tuesday, June 14th - Dinner at 7:00pm at Benjamin's Calabash in North Myrtle Beach. The cost will be $25 per adult; $12 for kids 6-12; $6 for ages 3-5 and free for under 3. The meal includes all you can eat 170 item seafood buffet with crab legs, Chinese bar, pasta bar, American foods bar, Mexican bar, bread bar, salad bar, dessert bar, drinks (non-alcoholic), and tax and tip!! Normally, it's about $30 per person plus tax, tip and drink. The room we have reserved has windows that overlook the intercoastal waterway and holds up to 300. This room is very nice and private :) There is plenty of room for all of us to move around and to let our children have a great time without disturbing the other diners. Park out back by the intercoastal waterway and use the back door, downstairs entrance.   I will be collecting money in advance for this dinner!!
 

Anytime during the week -

Ripley's Aquarium at Broadway at the Beach.  The price is $6.50 per person!!!!!  Thank you again Ripley's Aquarium for this WONDERFUL discounted rate!!!!!!!

 

Other places of interest :

1. Hard Rock Café at Broadway at the Beach 
2. Shopping at Broadway at the Beach www.broadwayatthebeach.com   Fireworks on Tuesday's only 10pm
3. Amusements parks/ water parks
4. Damon's Restaurant next door (for wonderful prime rib, steaks and ribs)
5. NASCAR speed park at Broadway at the Beach.
6. The Gay Dolphin gift shop oceanfront (9th Ave. N.) Myrtle Beach - this is a MUST go place, it's been there since I can remember and it still looks the same, nothing has changed!!!  It it VERY 60s looking on the inside. Fireworks every Wednesday night at 9pm on the Boardwalk. 
7.  Coastal Grand Mall - nice mall, close to the hotel (near the airport)
8.  Barefoot Landing shopping center in North Myrtle Beach.  Fireworks display on Monday's at 10:15pm.
9.  Tanger Outlets at Highway 501 in Conway or North Myrtle Beach on Highway 17 at Highway 22. 


All events during this retreat will include children and social interactions with siblings. This gathering is very informative and a must for any family with an Apert child or an adult with Apert. Since this syndrome is so rare, it is hard to meet and discuss medical information and society with those who are in our same situation. The siblings of the child with Apert will also benefit knowing they are not alone with a brother or sister that is unique.

Need more info: Write to me at IrmoCat2@aol.com  Hope to see you all there!!!

:) Cathie Sears :) 

If you make a reservation and you are coming, PLEASE contact me so I can put you on our list for the head count for the pizza party on Sunday night and for the Saturday dinner at Benjamin's Calabash!! I also need to know to make sure you get in our block of rooms and floors at the Crown Reef.

 
Days Hours Minutes Seconds

Left before June 10, 2011, 3:00PM EDT!!!

 Tentative list of families: I will add families as I hear from them... @ = reservations made

Sears - Don, Cat & Teeter  SC  @
Maxwell - Ron, Pam & Susie  GA  @
Hill - Mike, Robin, CarmenRae & Morgan & Sherry Tyre  GA  @
Lefebvre - Dianne  & Sarah Geary  MA 
MacDonald - Robin & Lindsay  Canada  @
Brown - Jenny  GA  @

Amerman - Judy and Nick   MI  @
Siebert - Brenda and Jon  TX  @
Contreras - Ruth, Joe & Kris  TX  @
Tait - Richard, Rene, Julia & Jenn  Canada  @
Leopard - David & Beth, Sumer, Cassidy & Dawson Mitchell  GA  @
Arnold - Maggie & Sir Dan  FL  @
Mathis - Christina & Zoey  TX  @
Guyette - Lisa & Samantha CA  @
Miller - Jack, Rachel, Erica, Nicki & Michelle  GA 
Weir - Andy, Ivy, Michael & Mark England
Starr - George, Rose & Donovan  KY  @
Saylan - Liz  GA  @
Moore - Chris, Shan, Aubri, Katlyn & Ashanti  AL  @
Gartner - Andrea  FL  @
Ryan - Jim, Jean, Tracy & Meg  VA  @
Whitten - Cheryl, Matthew, Ben & Emily  AK  @
Fisher - Mark, Theresa & Mike  FL  @
Castor - John, Jasmine, Lilli, Bella & Ellie  NC  @
Foley - Patrick, Julie, Kevin  OH 
Holt - Tim, Mechelle, Chelsea & Courtney  NC
Porcelli - Ann, Niko, Vincent & Joe  MO  @





 

 

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