2015 PWSA (USA) National Conference
Orlando, FL | Buena Vista Palace at Lake Buena Vista, FL | November 4th - 7th
What an amazing conference this will be! PWSA (USA) is celebrating its 40th year as the largest support, research and advocacy organization for people and families with Prader-Willi syndrome in the United States. This conference will reflect on what we’ve accomplished and expound on what is ahead. Each age group will have a different set of topics scheduled within a track where the most up to date information will be presented by our leading experts. Families and Professionals will be able to work together with the goal to increase your knowledge and resources.
We are also hosting the International Professional Providers and Caregivers Conference on November 4th at the beginning of the conference week.
Young Infant Programs (YIP) and Young Adult Programs (YAP)
Due to the complexity of the medical, dietetic, and behavioral issues related to PWS, it is imperative that professional staff and approximately 100 dedicated and educated volunteers are on hand for two days while the YIP, YAP, and sibling programs take place. This allows the parents a break from constant caregiving and thus they are able to participate in the conference and workshops. A focus of our program is to raise the self-esteem of our children and adults with our programming. Our children are so often singled out as being different. At our conference they are able to work and socialize with people just like themselves. We even have a gala for our children so they can socialize and dance and for at lead a few hours feel normal. There is a separate track for siblings of people with PWS to help provide them with support and guidance for living with a sibling with the syndrome.
YIP (Youth and Infant Program) Registration
The two forms below are for young children with Prader-Willi syndrome and siblings. YIP is geared towards children ages 0 through 6. Participants are divided into two groups for activities.
- Ages 0-24 Months (5 participants)
- Ages 2-6 (55 participants)
YAP (Youth and Adult Program) Registration
This form below is for participants with Prader-Willi syndrome who are age 7 through adult (limited to 96 participants). Attendees will be placed in smaller groups according to age.
This is for participants age 7 to 15 who have a brother or sister diagnosed with Prader-Willi syndrome.
This registration is only for people who are volunteers and will not be attending conference sessions. If you will be attending conference as well, you must fill out the PWSA (USA) Participant Registration Form.
Conference Sponsorship and Exhibitor Registration
If you want to print out the Conference Sponsorship and Exhibitor Registration, Click Here
Tuesday, November 3
– International Professional Providers and Caregivers Board Meeting
Wednesday, November 4
– IPWSO Professional Providers & Caregivers
– Chapter Leaders Day 1 is for the director, president, vice-president of each chapter organization.
– Clinical Advisory Board Meeting & Dinner
– Scientific Advisory Board Meeting
Thursday, November 5
– The 29th Annual Scientific Day is for PWS-related research professionals to present their research findings to their colleagues. Parents and other professionals are welcome to attend and observe; however, a summary of this day will be presented to the parents during the General Conference. For details see page 9.
– Professional Providers Day is for professionals providing supports within an education, vocational or residential setting.
– Chapter Leaders Day 2 is for the director, president, vice-president of each chapter organization.
– Welcome Reception Please join other families that evening from 5:00 – 9:00PM as we meet and greet and register for the conference. There will be games and activities for the children. Young and old love to get a chance to see Mickey and/or Minnie, who usually make a grand appearance!
Friday-Saturday, November 6 & 7
Experience two full days of presentations, information, workshops, practical suggestions and a time to spend the day with other parents who walk in your shoes every day, during the age-specific four tracks that support the needs and interests of parents and caregivers of children and adults with PWS. We have assembled the “Top Acts” of professionals who will present the latest in research and support programs, such as education advocacy, behavioral, medical and therapeutic interventions, in addition to legal, financial, advocacy, supported living and family considerations.
Simultaneously, there will be separate sessions to care for and entertain our children and adults with PWS. A separate “sibling only” session will address the needs and celebrate the accomplishments of this important part of the family structure. Our programs, designed for our children and adults with PWS (as well as siblings), are second to none and not to be missed.
For 2015, we are fortunate to have the Latter Day Saints Church missionaries joining us, working in our programs as volunteers. Under the supervision of professional staff, our children will receive attentive and loving care.
PWSA (USA) Scientific Day Agenda
2015 Scientific: Merlin G. Butler, MD, PhD
Kansas University Medical Center, Departments of Psychiatry & Behavioral Sciences and Pediatrics, Kansas City, KS
Schedule of Events:
Wednesday, November 4, 2015
2:00 – 6:00 pm – Registration
Thursday, November 5, 2013
7:30 am – 8:00 am – Registration
7:45 am – 8:30 am – Continental Breakfast
8:30 am – Noon – Keynote Speaker – Dr. C. Sue Carter: Scientific Sessions
Noon – 1:15 pm – Lunch
1:15 pm – 5:00 pm – Scientific Sessions
6:00 pm – 10:00 pm – Scientific Reception
Dr. C. Sue Carter, PhD, Director of the Kinsey Institute at Indiana University, is an expert in neuropeptide influences on behavior, specifically Oxytocin.
There will be 15-18 presentations covering a broad range of topics including genetics, mortality in PWS, cardiology issues, gastroenterology, endocrine, metabolic, imaging, psychiatric and behavior issues.
- Scientific Overview, Dr. Jennifer Miller, Dr. Merlin Butler, Tom Hughes (Zafgen – Beloranib), Dr. Keith Gottensdiener (Rhythm), Neil Cowen (Essentialis – Diazonxide), Michael Reidy (Ferring – Carbetocin)– An Update on Clinical Trials
- All About Schools, Evan Farrar and the new Special Education Advisory Board (SEAB) A wide range of school-related issues will be discussed, including strategies for working with school personnel, tips on IEPs, managing behavior challenges, and more. A Q & A session will be provided.
- Growth Hormone and Other Medical Considerations for Infants & Children,Dr. Jennifer Miller
- Understanding the Basics of Speech, Language, and Oral Motor Skill Development: Birth through Pre-K, Katie Hartman, MA, CCC-SLP
- What’s Food Got to do with it? Lauren Martin, RD, LDN, The Children’s Institute. This presentation will address: What types of food should you serve? What portions are appropriate? Problem solving tips for common food challenges families and providers often encounter
- The Adult Years – Aging and Behavior in PWS, Dr. Elizabeth Roof
- Parenting Hacks to Get Behavior on Track, Kevin Jackson, PhD, BCBA-D – Clear and specific actions that parents can take on a regular basis to improve the behavior of their child with PWS
- Psychiatric Medications, Dr. Jan Forster
- Raising your Child with PWS: Beyond Protection to Preparation, Amy McDougall, MS, & Jonathan Smith, LCSW – Techniques and approaches to prepare your child for the developmental tasks of adolescence and adulthood
- Parenting Success with Less Stress, Kevin Jackson, PhD, BCBA-D – Three critical skills that provide a basis for effective parenting will be described and demonstrated
- Therapeutic Interventions, Janice Agarwal
- Advocating for the Person with PWS in the Emergency Room, Dan Beaver, MD – This presentation will familiarize you with the ER process as well as provide you with strategies and resources you can use in your advocacy
- Behavior Modification for Adolescents, Dr. Linda Gourash
- The PWS Behavioral Phenotype: Through the Lens of the Polyvagal Theory,Stephen W. Porges, PhD – The Polyvagal Theory explains how atypical regulation of the vagus (a cranial nerve involved in regulating the autonomic nervous system) would lead to several of the behavioral problems that are associated with PWS
- Music for Expression and Growth, Ellyn Thornton – This presentation will cover the social and creative benefits of music and techniques to encourage success and enjoyment
Friday 11/6 Breakfast for YAP, YIP and Siblings:
- 4 oz.apple Juice
- Small box of Cherrios
- 1/2 pint of skim milk
- 1 cup fresh Strawberries
- individual Dannon light n fit 60 cal. yogurtSaturday 11/7 Breakfast for YAP, YIP and Siblings:
- 4 oz. apple Juice
- Honey Nut cheerios
- 1/2 pint skim milk
- assorted individual yogurts 60 cal.
- 1 cup fresh StrawberriesFriday 11/6 Lunch and snacks for YAP (7 years of age and older)
- Morning snack: 100 cal. snack and 0 calorie fruit flavored water
- Afternoon snack: 100 calorie bag of Lorna Doone cookies and 0 calorie flavored waterLUNCH:
- Light Fruit Cup
- 100 Calorie Individual bag of gold fish
- Fat free all whole wheat wrap with 2 oz turkey and 1 slice fat free sliced cheese, lettuce & tomato, light mayonnaise
- 1/2 dill pickle
- Fruit 2 o drinkSaturday 11/7 Lunch and snacks for YAP
- Morning snack: 100 calorie individual packs of pretzels & 0 calorie flavored water
- Afternoon snack: 100 calorie individual pack of cheez- its & 0 calorie flavored waterLUNCH:
- Mini box of raisins
- Baked chips
- Whole sandwich on whole wheat bread with 3 oz lean ham, lettuce, tomato and 1 tsp. light mayonnaise.
- 1/2 dill pickle
- Fruit 2 0Friday 11/6 Snacks and Lunch for YIP (6 years and under)
- Morning Snack: 100 calorie individual bags of Lorna Doone shortbread cookies; 5 calorie Minute Maid Fruit falls
- Afternoon Snack: 100 calorie individual bags of Teddy Grahams; 5 Calorie Minute Maid Fruit FallsLUNCH:
- Small cup of Gold Fish
- Fat free whole wheat wrap with 2 oz turkey and 1 slice of fat free sliced cheese and light mayo
- Fruit 2 0 drinkSaturday 11/7 Snacks and Lunch for YIP (6 and under)
- Morning snack: 100 calorie Individual bags of pretzels or cheese its & 5 calorie minute maid
- Afternoon snack: 100 calorie individual bags of Lorna Doone cookies & 5 calorie minute maidLUNCH:
- 1/2 cup sugar free jello jigglers
- whole sandwich on whole wheat bread with 1 oz. lean ham and 1 tsp. light mayo
- 5 calorie minute maid fruit falls