Gator-Willi News Page 3
Total Page:16
File Type:pdf, Size:1020Kb
G a t o r - W i l l i N e w s P r a d e r - Willi Florida 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.