G a t o r - W i l l i N e w s

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1 G a t o r - W i l l i N e w s P r a d e r - W i l l i F l o r i d a A s s o c i a t i o n Volume 79 February 2014 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. SCHOOL ADVOCACY TRAINING April 4 10:00 am 4:00pm MUST PRE REGISTER see page 4 Westgate River Ranch Conference and Walk a Thon April 4,5,6, River Ranch Blvd, River Ranch, FL (863) see page 4 Friday evening 6:00 8:00 pm Pizza party and uniting with friends and families Board Meeting at 8:00 pm Saturday - Conference Speakers: Dr. Dan Driscoll (University of Florida) Dr. Marilyn Dumont-Driscoll (University of Florida) Evan Farrar, Crisis Counselor at PWSA(USA) Ken Smith, Executive Director at PWSA(USA) RAFFLE Please Bring items or Gift CARDS BBQ Dinner - Hay Ride - Rodeo - Dancing - Music Sunday - Walk a Thon & Fundraiser On the MOVE - See page 3 Set up you own personal page to raise funds and awareness. -on-the-move Even if you are unable to attend event you can participate in your own FUND ME page and Walk that day at home with friends and family

2 Gator Willi News page 2 President s Letter Hello Florida Families, By popular demand we are going back to Westgate River Ranch for our Spring conference! We will have our registration, meet and greet pizza party on Friday evening. The Board will have our meeting at 8:00 p.m. on Friday night also. If you have an interest in becoming a board member or officer, please contact me. We will be having elections this meeting. As an added bonus, the organization will be paying for everyone s lunches on Saturday during the conference, both for the adults and the children s program. We hope you will all be able to attend. If you have never been here for our conferences you are in for a treat. We will be hearing from Dr. Dan Driscoll, Dr. Marilyn Dumont-Driscoll, Evan Farrar, crisis counselor at PWSA(USA) and Ken Smith, Executive director at PWSA(USA). We will be having our big On the Move fundraiser on Sunday morning where we will do our Walk at the Ranch. I have sent out a link (shown on page 3) that shows you how to set up your own personal fundraising page for the walk a thon. It is so easy and we need everyone to participate even if you cannot physically attend the walk. It is so easy to do and your family, friends and co-workers can go online and donate. Every dollar counts so please take the time to help our group so we can continue to help all of you. Once again we will be doing our raffle with the children on Saturday so if you have items to donate, please bring them. Gift cards are always popular. After the raffle we will go on a hayride and BBQ dinner and then if you wish to attend, the rodeo is Saturday evening followed by a free street dance party. The rodeo is a lot of fun and it allows extra time for all of us to bond and fellowship. I look forward to seeing you all there. Please contact me for additional information about the conference or Walk a thon. Until next time, Michelle Torbert President, PWFA Board Chair, PWSA(USA) Pictures from National Conference. Reach me through my: PWFA2007@aol.com OR WEBSITE AT PWFA.ORG - Newsletter available AT PWFA.org

3 Gator-Willi News page 3 S u n d a y A p r i l 6, : 0 0 a m. W e s t g a t e R i v e r R a n c h O n t h e M OVE Walk a Thon Set up you own personal page to raise funds and awareness. Even if you are unable to attend event you can participate in your own FUND ME page and Walk that day at home with friends and family WALKER INCENTIVES Will be awarded at walk or sent to you. Free T Shirts included in registration $20 Walker Donations over $100 1 free registration Walker Donations over $200 1 free registration + free On the Move water bottle Walker Donations over $300 1 free registration + free On the Move TERVIS Tumbler Walker with Highest Earnings will Receives a free Conference, Hotel, Meeting Meals. CORPORATE SPONSORS Please contact businesses to support either $$ or in Kind Donations If you need Registration forms or Corporate Sponsor forms and details see website PWFA.org or contact Deb Peaton or debpeaton@yahoo.com PLATINUM SPONSOR $1,500+ GOLD SPONSOR $1000+ SILVER SPONSOR $500+ BRONZE SPONSOR $250+ FAMILY HONOR SPONSOR $150+ Last Time we had 230 people participate, 13 Corporate sponsors, and raised $12k. Our funds go directly to helping our children and families, and grants for conferences.

4 Gator-Willi News page 4 Westgate River Ranch Newly Renovated Rooms Room Reservation code: Prader-Will Florida Association Deadline March 14, 2014 Lodge Suite $109 plus tax, sleeps 2, queen bed, kitchenette, microwave, toaster, mini refrig, coffee maker, stove top dining area and patio Lodge Guestroom $119 plux tax, sleeps up to 4, features 2 queen beds, kitchenette, microwave, toaster, mini refrig, coffee maker, stove top dining are and patio Deluxe Lodge Suites $139 plus tax, sleeps up to 4 people, features 2 queen beds, kitchenette, microwave, toaster, mini refrig, coffee maker, stove top dining are and patio SPECIAL EDUCATION ADVOCACY WORKSHOP Must Pre-register The workshop will be held from 10AM-4PM on Friday April 4th at Westgate River Ranch As a special addition to this year s Spring Conference, we will be holding a Special Education Advocacy workshop designed to help parents work more effectively with schools. Clari Bocanegra and Evan Farrar will co-facilitate the workshop. Clari, in addition to being a parent of a child with PWS, is also one of PWSA (USA) s Wyatt Special Education Advocates. Evan is a PWSA (USA) Crisis Intervention Counselor and a graduate of the William and Mary College of Law s Special Education Advocacy Institute. Both Clari and Evan also serve on the Board of the Florida Prader-Willi Association. We hope you can join us for this free interactive workshop. Space is limited so please register early by ing Evan Farrar at cic3@pwsausa.org and cc'ing pwfa2007@aol.com If you wish to attend this workshop you will need to register for an additional night stay on Thursday or drive in on Friday morning. Lunch will be provided for you free of charge and there is no fee for the workshop. This will be covered by the association for all parents wishing to attend. You will just need to pay your additional hotel night. Also there will be NO childcare offered that day so you will need to make arrangements for your children if you attend. This is a wonderful opportunity, so if you are able to take advantage of it please do. If you have any questions about this please contact : Evan cic3@pwsausa.org or Michelle PWFA2007@aol.com or SEE PAGE 5 for more information about the Workshop

5 Gator-Willi News page 5 The SCHOLARSHIP ESSAY contest was participated by 4 of our siblings to Write at least a 250 word essay based on one of the following question. What would you like the world to know about PWS and the people affected by the disorder? First Prize $ Second Prize $ Third Prize $ Please see all essays submitted, they were judged by 5 impartial members. Please see all of the heart felt essays written throughout the newsletter. Thank you to all that participated, we look forward to making this an annual event. Judges chose based on content and not structure. Exhibit D - FIRST PRIZE What would you like the world to know about PWS and the people affected by the disorder? I would like the world to know that having a sibling with a disability of any kind can be a blessing in disguise. Many who might think about how terrible or troublesome a special needs sibling might be only see the behavior issues, the daily tasks like locking up the pantry or refrigerator which can be an inconvenience to one s life. Even though those things are stressful, the loving, caring nature of my sibling, and her slapstick sense of humor makes it all worth it. Having a Prader Willi sibling has humbled me and made me so grateful for what I have, and really how much easier my life is than hers. She has to live with endless hunger on top of a strict diet, teasing middle school kids and the thought of knowing that she will never have a normal life. She recently turned sixteen, which for most is a very exciting birthday because they get to go to the DMV with their parents, and try to get their driver s license. My sibling will not have the opportunity to do that. Although it might sound silly, events like this are a big part of a teenager s life. And when I lie in bed at night, and just try to put myself in her shoes, and the life style she has to live it almost brings me to tears. She can surely stress you out, but come back and melt your heart with a hug or a soft I m sorry. I ve always said this, I wish (my sibling) didn t have Prader Willi for her own sake, but knowing her now, I would not have it any other way. My family always comes together to try to make her life as stress free as possible, and to be there whether she needs an answer to a problem, help studying for a test, or just a hug and an I love you. I would really want people to know that although living with a sibling that has Prader Willi is stressful and emotionally taxing at times, what you get from the experience and the perspective you can see is truly amazing. I love my sister more than anything in the world, and would not ask for anything else but for her to be in my life.

6 Gator-Willi News page 6 Wyatt Special Education Advocacy Training (WSEAT) One of the WSEAT planners, Evan Farrar (PWSA (USA) Crisis Intervention Counselor, said, "We couldn't be happier about the success of the WSEAT and the outstanding group selected to participate. This is really just an exciting first step in building a dynamic special education network within the PWS community which will help us all better support students with PWS." Farrar encourages anyone interested in future national special education advocacy trainings or development of the special education advocacy network to contact him at cic3@pwsausa.org to learn more. Stay tuned to the e-news, PWSA on Facebook, and our website for more news about the WSEAT. In the meantime, here is some of what the graduates of the first WSEAT training are saying about their experience: Comments from those that attended previous trainings: "Wow. This training took the meaning of advocacy to a whole other level." "The WSEAT training was a great opportunity to learn about PWS specific needs within the school environment." "Amazing, very informative, and extremely beneficial for individuals seeking to advocate for all disabilities." "The WSEAT program is a positive and empowering step by PWSA (USA) to help parents ensure a safe and productive school life for their kids. It is a great opportunity to help parents in my state." PWS Giving With Heart Fund Fund to help our PW Children and Adults who have needs: i.e. Clothing, linens, eyeglasses etc. Many of our PW s after expenses for the month only have $60.00 for clothing, toiletries, haircuts each month. And many have no extended family to help with these items. Make checks to PWFA in memo: Giving with Heart Fund Desiree Guiliano,1580 NW 97th Ave., Coral Springs, FL

7 Gator-Willi News page 7 REGISTRATION PWFA WESTGATE RIVERRANCH Name Number of Adults Phone PW Child Age Children Names and ages Children Names and ages Children Names and ages Children Names and ages Child or Adult to Volunteer to help with YAAP program BREAKFAST on you OWN - Restaurant gets backed up - Recommend on your own in the Rooms with Kitchettes. There is a General Store on site. PLEASE FILL OUT COUNTS: Friday Night Pizza includes your pizza and drinks x $3.00 = Box LUNCH for YIP (5 and under) Peanut butter and sugar free jelly on light bread, teddy grams, sugar free peach cup or banana and sugar free punch $FREE YAP lunch (6 and up) - grilled chicken breast sandwich w/ lettuce and tomato, fat free mayo and mustard (on the side) side salad w/ fat free ranch or Italian dressing, sugar free peach cup or banana, pretzels and sugar free punch. $FREE Meeting: Box Lunch The adults have a choice of 3 different sandwiches, which they need to pick ahead of time: All sandwiches come a bag of assorted chips, a side of potato salad, pasta salad or coleslaw, fresh whole fruit, a cookie and a choice of assorted sodas and water. 1. The Arabian - roasted turkey, smoked ham, applewood bacon and swill cheese on a sourdough baguette. $FREE 2. The Appaloosa - Roast Sirloin of beef, thinly sliced and piled high with horseradish jack cheese on a bakery fresh Kaiser roll. $FREE 3. The Palomino - grilled marinated vegetables with fresh mozzarella cheese and a sun dried tomato hummus served on rye bread. $FREE Hayride and BBQ DINNER Adults x $20.95 = Children 5 12 under 4 free x $13.95 = RODEO Adults x $14.00 = Children 5-12 under 4 free x $ 7.25 = TOTAL Checks made to: PWFA - Mail to: Michelle Torbert SW 285th Street Homestead Fl 33030

8 Gator-Willi News page 8 ESSAY Exhibit A Page 2

9 G a t o r - W i l l i N e w s ESSAY Exhibit B - Second Place What the world should know about PWS Prader-Willi syndrome is a congenital disease (present from birth). It affects many parts of the body. People with this condition are obese, have reduced muscle tone, and diminished mental ability. PW s have sex glands that produce little or no hormones, however, with proper therapy, the endocrine system can be treated to counteract short stature, and modify body composition, thereby reducing the chance of excessive obesity. The average intelligence is 50-70, with less than five percent scoring as high as 85. Most PWs will have developmental delays as a result. PWS is a spectrum disorder, so symptoms can range from mild to severe and change throughout the person's lifetime; various organ systems are affected. At first PWS sounds intimidating and rather scary, but PWs have warm and tender hearts and are very caring people. With proper diet, care, and therapy these children and adults can live very healthy happy lives. Having a sibling with PWS has improved my life in many ways and opened my eyes and heart to different ways of thinking about the world. I am proud of all my brother has accomplished in his life. It was his example that provided the important lessons of how critical patience and perseverance are to achieving any goal. He did not give up when something was difficult, so how could I? I know for a fact I would not be the man I am today without the love and support my brother has always given to me. He was right there beside me during all of my childhood activities, cheering me on and inspiring me. Although he was challenged he seemed to push through any obstacle and flourish. Seeing someone grow and fight without ever giving up or even complaining can have quite a strong impression on a young man. Every day I see PWS more as a blessing to my life. I do not fear the possibility that I may someday be challenged either physically or mentally, nor do I worry that my own future child might have Prader-Willi syndrome. I encourage everyone to learn more about the syndrome by visiting PWSAUSA.ORG. When someone asks me about PWS, my response is to suggest that they reach out to a PW themselves. I give them my personal guarantee that their day will be brighter after they do. ESSAY Exhibit C - Third Place What I want people to know about Prader-Willi Something that I would like the world to know about Prader Willi Syndrome is that it is a syndrome that affects not only the individual that is suffering from the syndrome but every single person that the individual encounters and creates a relationship with either being their parents and siblings to grandparent s friends and teachers. This syndrome comes with some of the greatest rewards and some of the hardest challenges you will ever face. This syndrome comes with a great amount of responsibility for the individual but even more for the family of the individual. It is our responsibility to keep the individual safe and healthy at all times even when they can t. It is the responsibility for the ones who are closest to the individual to always be there as either a listening ear and a shoulder for them to lean on, and sometimes the bad guy who has to tell them no. This is one of the biggest challenges that comes along with this syndrome being that voice inside their head telling them no, they cannot have something that they desire. Something more than just a toy or an activity, but food which so many other children and people in general are rewarded with daily from in school starting in pre- k to in work places as gifts for a good work. Some of the greatest rewards in my life have been given to me by my little brother, he is the most caring, loving, and companionate individual I have ever encountered with in my life. He is only five years old, but can always tell when something is not right if someone he loves is sick or not feeling good that day he always right there trying to help take care of them. In school when someone else in his class is also special needs he is there trying to protect them and stand up to anyone he thinks is trying to tell them they can t do something. He is full of his own personality more than kids that do not have Prader Willi Syndrome, he loves to dance is not afraid if anyone sees his moves. He is very social able and will talk to anyone who will in return hold a conversation with him. Prader Willi Syndrome has taught me how to be patent, develop my own self- control and to keep an open mind in life. You never know what the person with the warmest heart is facing within their own mind and body.

10 Gator-Willi News page 10 -District Leaders- Denise Sarko 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 chloechan@msn.com Circuit 4 - Clay, Duval, Nassau area code 904 Circuit 7 - St. John s, Putnam, Flagler, Volusia area code 386 Christy Kirkpatrick chloechan@msn.com Circuit 9 - Orange, Osceola - area code 407 Circuit 18 Seminole, Brevard area code 407 Claire Bocanegra portofinosmiles@gmail.com Circuit 20 - Charlotte, Collier, Glades, Hendry, Lee area code 239 Angelia Yacovone aby822@aol.com Circuit 15 - Palm Beach area code 561 Desiree Guiliano ddguiliano@gmail.com Circuit 17 - Broward area code 954 Maria & Miguel Sanchez sm940@bellsouth.net Circuit 11 Dade - area code 305 Circuit 16 - Monroe area code 305 Jennifer Cheshire Jennifer_Cheshire@comcast.net Circuit 19 - Indian River, Martin, Okeechobee, St Lucie - area code 772 Kathleen Hunt KathuntPWS@aol.com Circuit 10 - Hardee, Highlands, Polk - area code 863 Circuit 6 Pasco, Pinellas area code 727 Circuit 12 - DeSoto, Manatee, Sarasota - area code 813 Circuit 13 Hillsborough - area code 813

11 G a t o r - W i l l i N e w s p a g e 1 1 Officers for President Michelle Torbert PWFA2007@aol.com Vice Pres. Deborah Peaton debpeaton@yahoo.com Secretary Laura Dunn lldunn4him@aol.com Treasurer Desiree Guiliano ddguiliano@gmail.com Board of Directors for Deborah & John Stallings debbiestallings694@comcast.net Deborah Peaton debpeaton@yahoo.com Steve Drago sdrago@arcalachua.org Jason John JasonJ904@comcast.net Angelia Yacavone aby822@aol.com Jennifer Cheshire Jennifer_Cheshire@comcast.net Marion Goodman m33703@aol.com Christy Kirkpatrick chloechan@msn.com Doug and Beverly DeLemos ddelemos@bellsouth.net Mary Pringle Pringleclan@MSN.com Maureen Fiske mofiske@comcast.net Michelle Wallace wallaceml@bellsouth.net Maria & Miguel Sanchez sm940@bellsouth.net Traci Bonali-Cain & Jim Wright health_ed_1@yahoo.com Claire & Ricardo Bocanegra clari@portofinodental.org Evan Farrar Cic3@pwsausa.org Denise Sarko djscameo@cfl.rr.com WANT TO SERVE AS A DIRECTOR OR OFFICER PLEASE CONTACT MICHELLE TORBERT

12 Prader Willi Florida Association SW 285th Street Homestead, FL V I S I T O U R W E B S I T E P W F A. ORG O R E M A I L : P W F A A O L. C O M In case anyone needs an additional copy of the Medical Alert booklet you can click on the link from National and print one out. If you want it in booklet form you can order them from National. Everyone should have a copy in each of your cars, your purse, etc. That way if an emergency ever happens you have something to show the doctors or hospitals Prader-Willi Syndrome Association (USA) 8588 Potter Park Drive, Suite 500 Sarasota, Fl Tel: Tel: International Prader Willi Syndrome Ipso.org