G a t o r - W i l l i N e w s P r a d e r - Willi Association

Volume 84 February 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.

Westgate River Ranch Conference & Walk a Thon April 29, 30 and May 1, 2016 Speakers “Helpful Tips for Mealtimes”

Hannah Stahmer, MS, RDN works with Dr. Jennifer Miller in the UF Department of Pediatric Endocrinology. Before coming to UF, she was a pediatric dietitian at Vanderbilt University Medical Center and the University of Alabama at Birmingham (UAB.) She received her B.S. degree from the University of Florida and her M.S. degree from UAB. Her special interests include Prader Willi Syndrome, weight management counseling, and diabetes education. "Strategies for weight control”

Ms. Kasey Bedard earned her undergraduate degree in psychology from the University of Florida, and her Masters in Education with a specialization in behavior analysis from Arizona State University. She has been working in the field of behavior analysis for four years, first as a behavior technician, and then as a Board Certified Behavior Analyst working with the individuals with Prader-Willi Syndrome (PWS) at the Arc of Alachua County. She is passionate about working with individuals with Prader-Willi Syndrome, especially in regards to developing healthy diet and exercise habits, and increasing independence. Ms. Bedard is currently employed by ABA Associates of Gainesville, Inc. “Key Components to Achieving a Successful Transition”

Joe Jackson is a native Floridian, who resided in the area of Panama City, FL before relocating to Gainesville, FL to fur- ther his education at the University of Florida. Joe became acquainted with The Arc as a youth through his grand- mother’s affiliation as a longtime board member of The Gulf County Arc, thereby prompting him to seek and secure employment with The Arc of Alachua County. Throughout his fifteen-year tenure at The Arc of Alachua County, Joe has occupied several positions within the agency, which include assistant residential manager, as well as residential manager of a group home that provided services to individuals with PWS. From the position of residential manager, Joe was promoted to Assistant Residential Director of The Arc’s Intensive Behavior/PWS Program and subsequently the Residential Director of the agency’s overall Residential Program, which includes clients with PWS living in group home and independent settings. Joe has spent a great deal of time working with clients with PWS, as well as their families and advocates and has been instrumental in helping them navigate the terrain to secure services and have a successful transition into The Arc’s Residential Program. Gator—Willi News page 2

President’s Letter

Hello Florida Families, I hope this letter finds all of you well and thriving. It has been busy year already and it seems our spring conference is just around the corner. I hope that you will all be able to attend, as we have a great group of people scheduled to speak. There should be something for everyone, so be sure to mark your calendars and make your reservations. The conference will be held at Westgate River Ranch the weekend of April 29-May 1, 2016.

We will gather on Friday evening outside the saloon for a pizza and salad meet and greet. This begins at 6:00 p.m. This is a nice way to say hello to old friends and meet new ones. The rest of the evening is on your own. On Saturday, breakfast is on your own. I would suggest bringing your own breakfast food as most rooms have kitchenettes. YIP and YAP registration will begin at 8:15 in the lodge. Our YIP and YAP volunteers have a great day of activities planned for your children.

Our day will begin at 9:00 a.m. Lunch will be at noon and then we will have a short break out session in the after- noon beginning around 1:00p.m. Our ever popular raffle will begin at 3:00 p.m. Items for the raffle are provid- ed by conference attendees and donations from friends and families. Gift cards are always a popular item. This year we will have a handmade throw as a special auction item. If you have contacts in your area that might be willing to donate items for the raffle, please, please, please contact them. Raffle tickets will be on sale throughout the day of the conference.

Evening activities include a BBQ and hayride beginning at 6:00 p.m. After dinner and the hayride, there is a ro- deo that you may attend. If you have never been I highly recommend it.

Sunday is a very important day for all of us as it is our annual ON THE MOVE walk to raise funds and awareness. In this newsletter you will find information on how to set up a donation page for your child. There is also a do- nation letter that you can personalize and send out to family, friends and businesses in your area. It is VERY IMPORTANT that every family set up a page and participate in this event. I would put a picture of your child and a short paragraph about them. If you cannot attend the conference, we still need you to set up a page and do a walk in your neighbor- hood. Every penny raised goes back into our organization to help families and those living with PWS. This year CASTING For A CAUSE has generously agreed to give us matching funds. So...the more money we raise the more matching funds we will receive. The walk will begin at 9:00 a.m. There will be a group photo before the walk. Please register for the walk using the forms provided in the newsletter. Once the walk is through we will say our goodbyes until next time. I look forward to seeing all of you at the conference. Together we can provide support and hope for each other and our family member with PWS. Should you need monetary assistance to attend the conference, please email , or call me directly. 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

Sunday May 1, 2016 9:30 am. Westgate River Ranch “On the MOVE” Walk a Thon

Set up you own personal page to raise funds and awareness. http://www.firstgiving.com/pwsausa/fl-on-the-move

Or a Search of firstgivng Florida on the move Even if you are unable to attend event you can participate in your own and Walk at Home. If you want to set up a page but Not register to Walk, Go to Register at Bottom of page you can set up a page without Registering

Registration for walk: $20.00 per person with a t-shirt (BY April 11, 2016 to Order Shirts) Late registration $25.00 ($5.00 more) late would be April 12, 2016 Teams 6 =$100.00

Incentives Raise Funds of: $125.00=1 free registration $200.00 free registration and I love someone with PWS Tervis tumbler $300.00 all of the above and long sleeve t-shirt Walker with Highest Earnings will Receives a free Conference, Hotel, Meeting Meals. CORPORATE SPONSORS Please contact businesses to support either $$ or in Kind Donations PLATINUM SPONSOR $1,500+ - GOLD SPONSOR $1000+ SILVER SPONSOR $500+ - BRONZE SPONSOR $250+ FAMILY HONOR SPONSOR $150+ Last Time we had 129 people participate, We raised $15k Our funds go directly to helping our children and families, and grants for conferences. Funds support Research, Support for our families and Children, Grants to conferences. If you need Registration forms or Corporate Sponsor forms and details contact Deb Peaton 813-294-2981 or email: [email protected]

RAFFLE at the CONFERENCES Items for the Raffle comes from Donations from our families that come to conferences, so bring items or Pick up GIFT Cards. Gator-Willi News page 4

Westgate River Ranch Call—877-502-7058

The code for the reservations for is as follows: Group Code is 24-585 DEADLINE April 11, 2016

Welcome reception, Conference, Hayride, BBQ dinner, Rodeo, Street Dances Bull Ride, Zipline, Walkathon

When: April 28-May 1, 2016

Where: Westgate River Ranch 3200 River Ranch Blvd. River Ranch, Florida

PWFA 2016 Membership RENEWAL Notice R e m i n d e r

Make checks $25.00 payable to: PWFA Please fill out and mail to PWFA —Deborah Peaton, PO Box 894, Newberry, Fl 32669

Name ______Address______Phone ______Email: ______for newsletter emailed. ___Check if you want your newsletter mailed to you ____ Check as a Service Provider newsletter Free Name of PW Child ______Date of Birth ______

Gator-Willi News page 5

This is a letter you could mail out to your friends and family if they don’t want to donate on your FirstGiving Page.

Dear Family or Friends, We are organizing a walk, Florida on the Move for Prader– Willi Syndrome, at Westgate River Ranch, River Ranch, Fl. DATE OF EVENT— May 1, 2016 Prader-Willi Syndrome (PWS) is a non-hereditary genetic condition that affects one in 12,000 people. Its effects include insatiable hunger, slower metabolism, learning disabilities, speech issues, behavior difficulties, and weak muscle tone among numerous other medical challeng- es. Morbid obesity is one of the primary, long-term concerns. The personal, financial, and emotional challenges for those with PWS and their families are tremendous, requiring life- long attention and support. On behalf of Florida Prader-Willi Association, please consider sponsorship and/or item donation to help us raise funds. Set up you own personal page to raise funds and awareness. http://www.firstgiving.com/pwsausa/fl-on-the-move or Search of firstgivng Florida on the move. To DONATE online Go to Register and at the Bottom of page you can set up a page without registering By contributing to our event, you will be supporting research and essential comprehensive services for those affected by PWS. We will be happy to work with you to create the appropri- ate visibility for your company and product(s) at the event. We thank you in advance for your consideration. Sincerely, ______PLEASE INDICATE WHO YOU ARE MAKING DONATIONS FOR IN THE MEMO AREA.

Please send checks or money orders to PWFA, PO Box 894, Newberry, Fl 32669 Gator-Willi News page 6 CASTING for a CAUSE May 21, 2016 Inshore and Offshore Fishing Tournament Homestead, Fl CONTACT: Michelle Torbert - [email protected] 305-245-6484 www.castingforacause.com

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. WE RECENTLY PROVIDED CLOTHES, JACKETS, UNDERWEAR, SOCKS, SHOES, SHEETS, TOWELS FOR 19 CLIENTS. Make checks to PWFA in memo: Giving with Heart Fund

PWFA , PO Box 894, Newberry, Fl 32669 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______Young Adult or Sibling to Volunteer to help with YAAP program______BREAKFAST on you OWN - - Recommend in your own in the Rooms with kitchenette Restaurant gets backed up - There is a General Store on site.

PLEASE FILL OUT COUNTS:

Friday Night Pizza includes your pizza , salad and drinks ______x $3.00 Adults = ______Cheese Pizza 237 calories per slice Veggie Pizza 242 calories per slice ______$2.50 (Age 6 and Up) - ______Pepperoni Pizza 298 calories per slice White Cheese pizza 274 calories per slice ______x 5 and under FREE = ______

Box LUNCH for YIP (5 and under) Peanut butter and sugar free jelly on light bread,(175 cal) teddy grams (120 cal), sugar free peach cup (30 cal) or banana and sugar free punch (110 cal) ______$4.50 = ______

YAP lunch (6 and up) - grilled chicken breast sandwich w/ lettuce and tomato,(300 cal), mustard (3 cal), (on the side) side salad (12 cal) w/ fat free ranch or Italian dressing (80 cal), sugar free peach cup (30 cal) or banana (105 cal), pretzels (160 cal) and sugar free punch. (110 cal) ______$7.50 = ______

Meeting:

Box Lunch The adults have a choice of 3 different sandwiches, which they need to pick ahead of time: All sandwiches come with 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 swiiss cheese on a sourdough baguette. ______$10.95 = ______

2. The Appaloosa - Roast Sirloin of beef, thinly sliced and piled high with horseradish jack cheese on a bakery fresh Kaiser roll. ______$10.95 = ______

3. The Palomino - grilled marinated vegetables with fresh mozzarella cheese and a sun dried tomato hummus served on rye bread ______$10.95 = ______

Hayride and BBQ DINNER Adults ______x $27.50 = ______

Grilled chicken (147 cal), Hot Dogs (140 cal) Corn on the Cop (70 cal) Mac n Cheese (130 cal 1/2 cup), Baked beans ( 140 cal), Cole Slaw, ( 41 cal 1/2 cup), Apple cobbler (130 cal 1/2 cup)

Children 5—12 under 4 free ______x $16.50 = ______

RODEO Adults ______x $15.30 = ______

Children 5-12 under 4 free ______x $ 9.00 = ______

Please make checks payable to Prader-Willi Florida Association or PWFA. PO BOX 894, NEWBERRY, FL 32669

Deadline for registration is Saturday, April 11, 2016 TOTAL ______

Checks made to: PWFA - Mail to: PWFA—Deborah Peaton, PO Box 894, Newberry, Fl 32669 Gator-Willi News page 8

New Group Home To Cater To Those With Rare Overeating Disorder By Alexandra Go January 13, 2016 Health and Science Many people can remember a time when they couldn’t seem to get full. But people with Prader-Willi syndrome feel that way all the time. Prader-Willi syndrome is a genetic disorder that occurs in one of every 15,000 to 25,000 live births, according to the National Institutes of Health. Those who have the disorder never feel satiated and eat uncontrol- lably – to the point where they must live in an environment where food is locked away from them. But The Arc of Alachua County will expand its abilities to help people with Prader-Willi syndrome, or PWS, face the challenges of living with the disorder and gaining control of their lives when it opens The Century Oak Group Home at The Arc between August and October of this year. It will allow the nonprofit, which has served people with PWS since 1989, to offer greater, hands-on care, said Mark Johnson, The Arc’s development and public relations manager. Right now the nonprofit serves about 70 people with PWS through treatments involving weight management, exercise pro- grams, and behavior modifications. For most clients, that treatment includes living at one of The Arc’s 8 PWS-specific group homes or combination group home. Previously, The Arc purchased homes and later modified them to meet the needs of PWS clients, said Joe Jackson, The Arc’s residential director. But according to Johnson, Century Oak Group Home will be “the first specifically designed and tailored for helping Prader- Willi clients.” One feature in the home, which officials recently broke ground for, is a specialized kitchen with lockable cabi- nets, food pantries, and refrigerators to protect clients from eating too much, he said. This is the site of The Arc of Alachua County’s future group home for people with Prader-Willi syndrome, a genetic disorder that causes a person to eat uncontrollably. Officials recently broke ground for the facility, which is slated to open between August and October of this year. (Alexandra Go/WUFT News) Beverly DeLemos, president of the Prader-Willi Florida Association, and who also has a child with PWS, said she believes PWS-tailored homes are invaluable to PWS clients and families, because such homes take food out of the equation and give clients the resources to lead safer, healthier lives. She also said the home will also add something else to their lives – love and acceptance. “Sometimes when you’re a person living with a disability, it’s very hard for the outside world to do that, ” DeLemos said, “so by living in a Prader-Willi specific home where people understand how you feel everyday – there’s that love and acceptance that really all of us want.” Angelia Yacovone’s 28-year-old son has Prader-Willi syndrome, but living 5 hours away from him makes it difficult to ensure her son is kept safe. “The new safety features are definitely a relief to me and I’m in favor of things like safety monitoring cameras,” said Yacovone. In addition to the specialized kitchen, the home will also have a security system, cameras in the common room and exterior of the house, a gate with sensors, and around-the-clock care. These precautions are necessary for the health and safety of its clients, as it will be equipped to handle those with the most-extreme tendencies, such as the urge to escape to find food or destructive behavior, Jackson said. To combat potential damage to the home stemming from clients’ food frustrations, Jackson said the house will be built from special materials, such as Plexiglas windows instead of regular glass. “I think my son views the cameras as an intrusion and lack of privacy, but also as a great help and reminder,” said Yacovone. “He understands it contributes to his safety and keeps him less anxious, worried and aggressive.” When the home opens, it will be able to house six PWS clients. They will most likely be chosen from PWS clients The Arc currently serves, specifically those that need PWS support and residential housing the most, Johnson said. The group home will be at 1811 NW 9th St. in Gainesville. A Florida Housing Finance Corporation grant of $367,000 and private donations will fund the project’s estimated cost of $390,000 to $395,000, Johnson said. G a t o r - W i l l i N e w s

Ready, set, walk…

RECRUITING WALKERS Don’t just assume people will show up. Create a plan to recruit a large number of walkers and their families which in turn will create a lot of awareness and donations. Announce your walk on your Facebook page and other social sites you use and ask your friends to join you as a fundraising walker. Send an email to all of your contacts telling them about your walk and asking them to join you or if they can’t participate as a walker, suggest they make a donation to your personal walk fundraising efforts. Reach out to all the families in your area that have a person with PWS. Ask 10 people to recruit 5 of their friends, coworkers, family members, and others. Now you already have 50 people! It can be that easy! Recruit coworkers at your business to form a team from the company. Challenge other companies that your business works with to form a walk team too. You can also ask local businesses that you frequent to form a team of fundraising walkers. A larger business can even have teams from several different departments for some friendly competition. It can be a great team building experience for a business and their employees, so sell it as that! Recruit walkers from your local clubs, organizations, church, or other groups that you belong to. Post your walk to an online event calendar.

SPONSORSHIP AND DONATIONS Ask businesses you frequent such as your hairdresser, a local restaurant, your dry cleaner, etc. to consider sponsoring your walk or donating items to raffle off or use as prizes. Customize fundraising, sponsorship, and donation letters. There are sample templates in the back of this packet that can be customized for your walk. Contact PWSA (USA) for any assistance needed. Contact business owners. Many local businesses, including your own workplace, may be able to help you promote the cause by sending out an email, encouraging a donation, putting together a team to walkor offering a sponsorship. A letter with quick, in-person follow-up increases the likelihood of donations. Be ready to tell the potential sponsor how you will publicly acknowledge their generosity.

DON’T FORGET TO SAY THANK YOU! This is probably the most important step! Once your event is finished, be sure to thank everyone who was involved – members of the planning committee, volunteers, attendees, event sponsors, those who contributed goods and services. Chances are, you will probably be asking them for a donation in the future so be sure to let them know how important and appreciated they are. A post walk party is a great time to thank your walkers in person for all of their efforts! You can also announce the top fundraiser and distribute prizes at this party. 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 - 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 – Circuit 7 - St. John’s, Putnam, Flagler, Volusia – Christy Kirkpatrick 407-397-9597 [email protected] Circuit 9 - Orange, Osceola - area code 407 Circuit 18 – Seminole, Brevard – area code 407 Claire Bocanegra 239-561-5370 [email protected] Circuit 20 - Charlotte, Collier, Glades, Hendry, Lee – area code 239 Angelia Yacovone 561-433-1321 [email protected] Circuit 15 - Palm Beach – Desiree Guiliano 954-753-5165 [email protected] Circuit 17 - Broward – area code 954 Maria & Miguel Sanchez 954-430-3492 [email protected] Circuit 11 – Dade - area code 305 Circuit 16 - Monroe – area code 305 Jennifer Cheshire 772-324-8031 [email protected] Circuit 19 - Indian River, Martin, Okeechobee, St Lucie - Kathleen Hunt 727-434-1929 [email protected] Circuit 10 - Hardee, Highlands, Polk - Circuit 6 – Pasco, Pinellas – Circuit 12 - DeSoto, Manatee, Sarasota - Circuit 13 – Hillsborough - area code 813 G a t o r - Willi News page 11

Officers for 2015—2017

President Beverly DeLemos 321-229-2986 [email protected] Vice Pres. Kathleen Hunt 727-434-1929 [email protected]

Secretary Traci Bonali 727-424-3133 [email protected]

Treasurer Deborah Hall-Peaton 813-294-2981 [email protected]

Board of Directors for 2010 —2013

Michelle Torbert 305-245-6484 [email protected] Deborah & John Stallings 772-882-4817 [email protected] Jason John 904-304-4553 [email protected]

Angelia Yacavone 561-433-1321 [email protected] Jennifer Cheshire 772-324-8031 [email protected]

Marion Goodman 727-525-0595 [email protected] Christy Kirkpatrick 407-397-9597 [email protected]

Mary Pringle 239-872-4778 [email protected]

Maureen Fiske 561-741-1087 [email protected]

Laura Dunn 305-898-3334 [email protected]

Maria & Miguel Sanchez 954-430-3492 [email protected]

Desiree Guiliano 954-753-5165 [email protected]

Claire & Ricardo Bocanegra 239-839-8774 [email protected]

Evan Farrar 941-312-0400 [email protected]

Mandy Vasquez 954-574-9636 [email protected]

Doug DeLemos 321-229-2984 [email protected]

WANT TO SERVE AS A DIRECTOR OR OFFICER PLEASE CONTACT Beverly DeLemos Prader—Willi Florida Association PO Box 894 Newberry, Fl 32669

V ISIT OUR W E B S I T E PWFA. ORG O R EMAIL : P W F A 2 0 15 @ GMAIL . COM

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 http://www.pwsausa.org/support/medalert.htm

Prader-Willi Syndrome Association (USA) 8588 Potter Park Drive, Suite 500 Sarasota, Fl 34238 Tel: 800-926-4797 Tel: 941-312-0400 Www.pwsausa.org

International Prader Willi Syndrome Ipso.org