March, 2008 - Newsletter

SAVE THE DATE!

June 1, 2008

             The Spring meeting of the New Jersey Chapter will be held on SUNDAY afternoon, June 1, 2008, from 1:15 to 4:30 PM in the Johnson Auditorium of St. Joseph’s Regional Medical Center, Paterson, NJ.  Speakers will include experts in PWS-related medical issues.  More information will be available in the next issue of this Newsletter and on the Chapter website.

 New York Conference May 1 - 3

             The 18^th Annual Conference of the Prader-Willi Alliance of New York Conference will be held from May 1 to 3 at the Best Western Sovereign Hotel, 1228 Western Avenue in Albany, NY.  The first day will be for providers, while Friday and Saturday, May 2 and 3, will be a general conference.  The conference program includes a long and impressive list of speakers, including many who have been featured at national events.  Presentations range from practical tips for navigating the medical, educational, and support systems to overviews on what scientists have learned about the syndrome.  Time will be provided for parents and providers to separate into smaller groups and meet with the presenters more informally.   

This is a wonderful opportunity to hear national speakers in a location only a few hours away.  If you have never been to a national conference, or cannot make this year’s in Milwaukee, you should seriously consider attending.  You may want to recommend it to providers who work with your child as well. 

The cost of the event is extremely reasonable.  Family registration is $30 for one day or $40 for two days for up to three members from one family.  Professional registration is $75 for the Provider Day, and $25 for each additional day.  Rooms are $88/night, single or double with children 18 and under free, but reservations must be made by April 19^th  to obtain this special rate.  For more information on the conference, visit their website at www.prader-willi.org, email alliance@prader-willi.org or call 1-800-442-1655. 

New Book from Canada 

The Ontario PWSA has just published an excellent book called Successfully Supporting People With Prader-Willi Syndrome:  A Handbook For Professionals, written by Jo Anne Nugent, Nugent Training & Consulting Services.  The Handbook provides practical information about best practices in supporting children and adults with PWS.  The primary focus is on school, residential and other staff who work on a day-to-day basis with people with PWS; families and other professionals will also find the information helpful.  The book costs $20 plus $6 shipping and can be ordered through www.pwsanetwork.ca or 416-481-8657. 

More New Resources 

            The law firm of Hinkle, Fingles & Prior has published two new resources that can be obtained free of charge by downloading them from their website, www.hinkle1.com, or calling 609-896-4200. 

Understanding Your Health Care Insurance and Appeal Rights 

Valerie A. Powers Smith and S. Paul Prior have authored a new guide for parents of children with intellectual disabilities.  The guide is designed to help parents understand the health coverage they have, understand their appeal rights, learn about other programs through which their child could obtain coverage, and minimize financial responsibility.   

Planning the Transition from School to Adult Life 

Herb Hinkle, Ira Fingles, and Dorothy Van Horn are the authors of this important new guide to transition services.  It presents information on federally-required transition planning and provides sections on how and when planning should begin, who should participate, strategies and sample activities that make sense, and how to develop and implement a plan that works.  If your child is in their teens, you should be thinking about transition planning.

National Conference in July 

The two-day General Conference is a parent/caregiver oriented program that brings together parents, caregivers, world-renowned scientists, clinicians and professionals in the field of Prader-Willi syndrome. Through a variety of presentations, focus groups, doctor panels, and sharing sessions, parents and other caregivers obtain the latest information about the syndrome and how to support children and adults who have PWS.  

The conference is being held this year at the Windham Milwaukee Airport and Convention Center. The registration fee of $175 for adults includes daily continental breakfast, snacks and lunches. This year, a children’s program is offered only for those aged 5 and under, at a cost of $100 per child for those 2 and under and $125 for those aged 3 to 5.  The hotel costs $98/night.  Both the New Jersey Chapter and the National Association provide scholarships and grants.  For more information about grants, please contact NJ President, Sybil Cohen at pwsa.nj@gmail.com or 856-795-4229.  For more information on the National Conference or to register, go to www.pwsausa.org. 

Use the Chapter as a Resource 

            Do you need help in registering for DDD or other services that you need?  Do you need someone to provide training about PWS to teachers or aides in school or to day program or residential program staff?  The Chapter may be able to help you.  We can supply copies of the DVD “Food, Behavior, and Beyond” by Drs. Gourash and Forster that was used at the Spring, 2007 meeting, as well as books and booklets especially written for school staff and people working with adults with PWS.  We can provide people to help you with paperwork or to conduct staff training.  We have access to case management professionals who are familiar with resources in the state and how to access them.  If you need help in any of these areas, call 973-628-6945 or email maaemba@bellatlantic.net and tell us your needs. 

            Another New Jersey resource is the Prader Willi Clinic, now held at St. Joseph’s Regional Medical Center in Paterson.  Dr. Jennifer Ibrahim, a geneticist, and Christina Flores, a genetic counselor, lead a team of pediatric specialists, who see the individual with PWS and jointly develop a care plan.  Chapter members Bob and Mary Hill serve as hosts for the Chapter.  To learn more about the Clinic or to make an appointment, call 973-754-2500. 

Where Do You Get Your

Information about PWS? 

Where do you get information about PWS?  How would you like to get it?  These are two of the questions asked of parents and providers at the NJ Chapter’s June, 2007, meeting and at a similar meeting in Utah later that month.  In general, parents and providers use every way they can to get the information they need. 

The great majority, 69%, said that they turn to the state chapter, and 52% said they go to the PWSA(USA).  Doctors and hospitals came next, particularly with younger parents, with 56% saying doctors and 23% hospitals.  Over half, 54%, rely on other parents.  Smaller numbers get information from community professionals, the internet, parent mentors, staff training sessions, and the individuals with PWS themselves.    

Reading written information received through the mail is still the preferred way to get information, with 65% wanting it, maybe because it can be shared with others easily.  However, 60% want to hear information, by attending lectures (50%), talking face to face (43%) or by telephone (17%) or hearing audiotapes or CD’s (22%).  53% prefer watching information on a DVD, and nearly half (48%) prefer to get information from websites. 

New Jersey parents, whose children are a bit older than those in the Utah group, were more reliant on the national organization and less on other parents for information.  They were also more likely than those in Utah to prefer getting written information in the mail and less likely to turn to the internet.  Providers were more likely than parents to rely on community professionals and less likely to rely on doctors or the PWSA.  They, too, preferred reading written information but also wanted DVD’s and audio resources.