PWANY 29th Annual Conference
May 3rd & 4th, 2019
Holiday Inn Binghamton
2-8 Hawley Street, Binghamton, NY 13901
Would you like to win a free 2 night stay at Woodloch Resorts in the Poconos? Tickets are on sale online at the conference registration page, can be purchased from one of our board members now or in person at the conference. - Good Luck!
2018 Conference Included by great presenters! We look forward to another great conference in 2019! We hope to see you then.
Our 2018 presenters included…
Tina Beauparlant: Regional Program Manager & Education Specialist at Parent to Parent. Tina presented on how to facilitate the transition from school to work.
Patrice Carroll: Patrice Carroll is Latham Centers’ world-renowned Prader-Willi Syndrome specialist. She works with Latham Centers’ residents with PWS, their families and consultants, continuously learning and teaching about PWS best practices. Patrice will present on navigating the dynamics of relationships and dating.
Dr. Craig Colas DDS Presented on dental concerns and treatments for those with PWS.
Heather Cruz: Pathways Resident Manager. Heather led a panel discussion with specialists including a behaviorist, nurse, and dietician from Pathways, a not-for-profit human service organization serving 2,000 individuals and families in 15 counties in the Finger Lakes, Southern Tier, and Rochester areas of New York.
Rachel Johnson PWANY Administrative Coordinator, Integrative Health and Nutrition Coach and PWS Parent. Rachel led a discussion on how to incorporate a healthier lifestyle for all family members and how to incorporate self-care strategies into every day routines.
Amy McDougall PWANY Board President, School Psychologist and PWS Parent. Amy presented on navigating the educational system as a parent and as a teacher working with a person with PWS.
Maria Picone Founder of TREND, Co-Founder of the Chion Foundation and PWS Mom.
Lara C. Pullen PhD Immunologist, President of the Chion Foundation and PWS Mom. Maria and Lara presented about TREND Turning Anecdotes into Evidence: An online network of consented patients and caregivers living with rare disease who are engaged in community powered science. Pitolisant is a treatment for patients with excessive daytime sleepiness associated with Narcolepsy with or without cataplexy. The Chion Foundation played a key role expanding availability of this medication in the USA. Information about this medication as a treatment for people with PWS will be presented.
Patrick R. MacGrath ChFC, ChSNC President Private Wealth Management Group, LLC . Patrick shared information to help families with financial planning specific to raising a child with special needs.
Anne Ogden: Care Design NY. Anne will present on the way services via OPWDD are coordinated for people with intellectual and developmental disabilities in New York State, known as People First Care Coordination. Under this new model, the Medicaid Service Coordination (MSC) program which is currently used to help people plan their services will be replaced by a new and improved program called Health Home Care Management.
PRADER-WILLI ALLIANCE 27TH CONFERENCE Highlights
APRIL 28TH & 29TH, 2017 – FRIDAY & SATURDAY
THE DESMOND HOTEL IN ALBANY, NY
By Popular Demand... Please find PDF Versions from some of our conference breakout sessions. Check back periodically as we will add info as we receive it.
TREND Community TREND PWS Diet Initiative Diet Initiative Sugar Free Info Childhood Apraxia
Our Conference theme this year was "Changes Today for a Better Tomorrow".
We had some of the biggest change makers in the PWS community on hand to present on current topics and answered your questions. Our presenters included...
- Dr. Moris Angulo Director of Medical Genetics and Assistant Director of Pediatric Endocrinology at Winthrop University Hospital, and a nationally recognized specialist in Prader-Willi Syndrome with the largest numbers of patients in the US
- Patrice Carroll Manager of PWS services Latham Centers in MA; co- chair of the PWSAUSA professional providers board of directors
- Dr. Cataletto: Pulmonologist at Winthrop Hospital
- Evan Farrar PWSA USA Family Support Counselor
- B.J. Goff Ph.D. PWSA USA National Educational Consultant
- Janalee Heineman PWSA USA Coordinator of Research & International Affairs
- Dr. Wendy Martinez Winthrop Hospital
- Amy McDougall PWANY Board President, School Psychologist and PWS Parent
- Jeanne Morris from Wilcenski and Pleat Attorneys at Law
- Lisa Pesante PWS Representative from OPWDD
- Maria Picone TREND creator, Ketogenic Diet Initiative Leader and PWS Parent
- Dr. Deepan Singh Psychiatrist at Winthrop Hospital.
- Stacy Ward PWANY's Provider Advisor
- Cynthia Whiting Speech Pathologist and PWS Parent
Prader-Willi Alliance 26th Annual Conference 2016 Highlights
Another successful conference! The Desmond Hotel was wonderful.
Picture 1: Lisa Pesante, our OMRDD representative
Picture 2:Rachel Johnson, President and Amy McDougall, Vice President
Picture 3: Jeannie Dickinson with her mother, Barbara McManus
Picture 4: Dance Time