G a t o r - W i l l i N e w s P r a d e r - Willi Florida Association Volume 85 AUGUST 2016 The mission of Prader-Willi Florida Association (PWFA) is to provide support through education, advocacy and research to the Prader-Willi community so individuals and their families may live to their greatest potential. October 14, 15, 16 Clearwater Beach, Fl Family Fun Day Conference Book your hotel early this is a special rate, and very desired location. Holiday Inn Hotel & Suites Clearwater Beach 521 S. Gulfview Boulevard, Clearwater Beach, Florida 33767 727 447-6461 or 1-800-770-6461 “Big George's back in the Day Clobberfest “ GROUP CODE BGH $149 per night and $12 per night for parking. Bring your beach supplies and chairs and be ready for a fun day on Beautiful Clearwater Beach. Crafts, face painting, games, and much more. Gator—Willi News page 2 President’s Letter Hello Florida Families, I hope this finds all of you well and enjoying your summer. I have been very busy this summer. We built a new house and moved in the middle of June. On July 16th we hosted an “I Do BBQ” for our daughter and her fiancé. It was a wonderful time spent with family and friends. Now that those things are over it is just about time for me to think about going back to work!!! Yikes! I attended the Chapter Leaders meeting in Wisconsin on July 8-10th. It was such a pleasure spending time with like-minded people whose sole goal is to make life better for those living with PWS. We enjoyed fellowship and learned a great deal about what is going on in the world of PWS and in oth- er chapters across the country. Included in this mailing is information about how to handle a situation with the Law Enforcement. There is a form included “blue form” that you can print and file with the local police should you desire to do so. It gives information regarding your child and PWS. Please take the time to look it over. At this writing, we are preparing for our upcoming event in October. We will host a volleyball tournament to raise awareness and funds for our chapter. The event will be held in Clearwater on October 14-16, 2016. Information about the hotel and activities are posted in the newsletter and on our Florida website accessi- ble through the PWSAUSA.org website. Please make plans to attend. If you have not paid your membership dues please do so. Dues go toward helping people attend conferences and events, providing needed supplies to those PWS adults that do not have family supporting them as well as helping with production of newsletters etc. The new membership form is included in this mailing. Please don’t hesitate…renew or join today. In August, National will begin presenting a series of six webcasts designed to help with school related is- sues. Modules one and two will cover IDEA+504 laws so that you will understand the basic concepts of special education laws and the history of special education in the U.S. Modules three and four will equip you with tools to be an effective advocate for your child in the school setting. You will learn strategies for working with schools and school professionals. Modules five and six will cover how to address the specific needs and challenges of students with PWS in the school setting. Each of these modules will be hosted by knowledgeable professionals and I encourage you to view them all. They will be on the National website and set to begin at the end of August. Keep a look out for them and join in. They are FREE. If you are parents of school aged children be sure to sign up for “School Times”. This is a valuable publica- tion designed to address issues and successes of our PWS children. Email: Evan Farrar [email protected]. to sign up. I will also send out the copies via email as I receive them. Please let me know if I can assist you in any way. I am here to serve you. If you are interested in serving on the board or in some capacity please email me. Until then… I wish you love, joy, peace and above all HOPE, Beverly Beverly DeLemos for more information 321-229-2986 or [email protected] Gator-Willi News page 3 Westgate River Ranch “On the MOVE” Walk a Thon We RAISED — $18,130 19 Families out of 285 imagine what we could do if YOU helped out . Highest Family Earnings for Lizzie Rogue - Emilio & Karla Varela They WON a Hotel and conference meals. Other Families that RAISED over $1000 were For: Abby Delemos, Keaten Hunt, Leslie Torbert, and Maya Vasquez We had a great conference. We had a hayride, ate BBQ, saw the rodeo and rode the mechanical bull. Gator-Willi News page 4 Print on Blue paper, and included parent number at the bottom. You can email [email protected] and I will send so you can print out. ATTENTION LAW ENFORCEMENT PRADER-WILLI SYNDROME CLIENT NAME AND DATE OF BIRTH PRADER-WILLI SYNDROME IS A DEVELOPMENTAL DISABILITY IT CAUSES COGNITIVE AND BEHAVIORAL ISSUES THAT CANNOT BE CONTROLLED BY THE CLIENT. THEY HAVE AN INSATIATIABLE APPETITE AND WILL SEEK FOOD. • THIS CLIENT HAS A ___IQ AND FUNCTIONS AS A ___ YEAR OLD • (NAME) WILL BE VERBALLY AGGRESSIVE BUT WILL NOT INJURE SELF OR OTHERS. KEEPING THEM IN A SAFE LOCATION WHILE THEY WORK THROUGH THEIR MELTDOWN WILL HELP AS WILL NOT ASKING THEM ANY QUESTIONS DURING THIS TIME, AS THAT PROLONGS THE TANTRUM. (or you can put the op- posite, ie: aggressive and what to do) • PWS CLIENTS MUST HAVE FOOD LOCKED FROM THEM AT ALL TIMES. IF THEY GET INTO FOOD UNSUPERVISED, IT IS LIFE THREATENING THIS PWS CLIENT WILL LIE ABOUT (food or whatever) STAFF HAS PWS INFORMATION AVAILABLE IF THERE ARE FURTHER QUESTIONS More information available at PWSA.USA.org Tel: 800-926-4797 or Crisis assistance Gator-Willi News page 5 “Big George's back in the Day Clobberfest” for PWFA This Volleyball Tournament was put together in memory of George Hunt to raise money. (since 2013) The family has decided to donate the funds to PWFA., for our families support and research. Bring Chairs to watch tournaments on the beach. Booths or Tents will be set up with face painting, games, crafts, etc. Silent Auction If anyone is interested in playing in the 4 person teams tournament it is $100 registration (includes shirts) Email or call her for registrations, shirt sizes and payment. Terrann Mayo - 727-420-8090. or [email protected] At Frenchy's Rockaway Grill, 7 Rockway Street on Clearwater Beach. First game starts at 9 am. (registrations at 8 am) Hotel Dining When it comes to finding great food and drink; follow the locals. A full breakfast, lunch, and dinner menu, expertly prepared with fresh ingredients, has made Jimmy's Fish House and Iguana Bar a first choice in Clearwater Beach dining. Gator-Willi News page 6 REGISTRATION PWFA—Clearwater Clobberfest Name________________________________________ Number of Adults ________ Phone__________________________ PW Child ______________________Age _______________ Siblings count ________ Ages _____________ Volunteer to help with CRAFTS and GAMES program_______________________________________ PLEASE FILL OUT COUNTS: Saturday Dinner on The Beach ____________ x $5.00 Adults = _____________ ___________ x 5 and under FREE = ____________ = _______________ If you want to pre order shirt please choose sizes below for $20.00 per person ____________ x $20.00 = _____________ Youth S M L XL ADULT XS S M L XL XXL XXXL Sizes 6-8 10-12 14-16 18-20 AMOUNTS AMOUNTS IF YOU WANT TO PLAY ON A 4 PERSON VOLLEYBALLEY BALL TEAM Name_________________________________ Phone______________ Name_________________________________ Phone_______________ Name_________________________________ Phone______________ Name_________________________________ Phone_______________ SATURDAY Volley Ball Players 4 x $25.00 = $100 TOTAL ________________________________ ADULT XS S M L XL XXL XXXL AMOUNTS PLEASE SEND CHECKS OR MONEY ORDERS TO : PWFA, PO Box 894, Newberry, Fl 32669 DEADLINE DATE October 1, 2015 Gator-Willi News page 7 Leslie Top Female Angler We Raised $10,000 for PWFA Casting for a Cause Raised $100,000 for Oxytocin Research & funds for PWSA 2017 National Conference Dr. Miller's goal is to raise 1million dollars to conduct the next phase of Oxytocin research. Rorri and William (Reel Crazy) Won 3rd Thank you to all our families that participated in in the Tournament, & Banquet. To Donate to the valuable and promising research go to firstgiving oxytocin FL which sought to evaluate how Oxytocin could help individuals with Prader-Willi Syndrome improve their social behavior, reduce their anxiety, and decrease their interest in food. Based on some of our families participation, results from this trial, doctors believe Oxytocin has the potential to be life changing for her and all others with Prader-Willi Syndrome. Gator-Willi News page 8 G a t o r - W i l l i N e w s Gator-Willi News page 10 -District Leaders - Denise Sarko 352-209-5805 [email protected]. Circuit 1 - Escambia, Okaloosa, Santa Rosa, Walton - area code 850 Circuit 2 - Franklin, Gadsden, Jefferson ,Leon, Liberty, Wakulla – area code 850 Circuit 3 - Madison, Hamilton, Columbia, Suwannee, Lafayette, Taylor, Dixie - area code 352 Circuit 5 - Citrus, Hernando, Lake, Marion, Sumter - area code 352 Circuit 8 - Baker, Union, Bradford, Gilchrist, Alachua, Levy – area code 352 Circuit 14—Bay, Calhoun, Gulf, Holmes, Jackson, Washington—area code 850 Christy Kirkpatrick 407-397-9597 [email protected] Circuit 4 - Clay, Duval, Nassau – area code 904 Circuit 7 - St.