What’s New & Upcoming Events

Visit this page frequently to keep informed of the latest events, new research opportunities, advances in research, or any other newsworthy items.


SAMSUNGAll Events Held! Don’t Miss Next Year’s Fun!

15th Annual Walking for Prader-Willi Syndrome Events!

  • Northern CA WALK     April 11   San Francisco
  • Central CA WALK        April 18   Clovis
  • Southern CA WALK    April 26    Los Angeles

 


PWS BEHAVIOR MANAGEMENT STRATEGIES THAT WORK

Training Session Especially for Parents, Extended Family, Babysitters and All Care Providers

break-bad-habitsThursday, May 14, 2015

9:00 a.m. – 1:00 p.m.

PWCF Offices 514 N. Prospect Avenue, CA 90277

Beach Cities Meeting Room – Lower Level/Bottom Floor

This Training Session, presented by PWCF Executive Director Lisa Graziano, M.A., LMFT, will provide valuable strategies to better manage the behavior of persons of all ages who have Prader-Willi syndrome. Role Play Learning Opportunities!

Information & Print Flyer    Register Online


Research Study Seeking Participants: Beloranib medication to reduce appetite. See flyers for information and participation criteria:  Belorabnib Recruitment flyer   /  Beloranib FAQ  /  BestPWS brochure  /  Zafgen Video

Two California Testing Sites:

1) Rady Children’s Hospital, San Diego. Principal Investigator: Lynne Bird, M.D. Contact: Rachel Winograd, RN, BSN at Rady Children’s Hospital 858-966-8453 or rwinograd@rchsd.org

2) University of California at Davis, Sacramento. Principal Investigator: Dennis Styne, M.D. Contact: Majid Mirmiran, MD, PhD at 916-734-4790 or majid.mirmiran@ucdmc.ucdavis.edu


Research Study Seeking Participants: Movement Difficulties of Children with PWS

Location: CSU Fullerton.  Principal Investigator: Daniela Rubin, Ph.D. Seeking children with PWS age 4-7 years with PWS.  

See Flyer for details. 


Research Study Seeking Participants: Diazoxide medication targeting appetite and energy expenditure. 

Location: University of California, Irvine. Principal Investigator: Virginia Kimonis, M.D., MRCP vkimonis@uci.edu (949) 824-0571.  Contact: Marie Wencel, Clinical Research Coordinator, UC Irvine  mwencel@uci.edu  (949) 824-0521

See  Flyer for details.


Research Study Seeking Participants: Oxytocin medication targeting anxiety, socialization behaviors, and appetite.

Anyone with a confirmed diagnosis of PWS ages 5-11 years may be considered.

Location: University of California, Irvine. Principal Investigator: Virginia Kimonis, M.D., MRCP vkimonis@uci.edu (949) 824-0571. Contact: Marie Wencel, Clinical Research Coordinator, UC Irvine  mwencel@uci.edu  (949) 824-0521


2015 Support Group Meetings

Southern California: 2:00 pm-4:30 pm at the BCHD Health District; 514 N. Prospect Avenue, Redondo Room (lower level/bottom floor), Redondo Beach.

      • Sunday, January 11
      • Sunday, April 12
      • Sunday, July 26
      • Sunday, October 25

RSVP for childcare for ages 12 and under: 310-372-5053

Northern California: 10:30 am-1:30 pm Support for Families of Children with Disabilities, 1663 Mission Street, 7th Floor, San Francisco.

Translation services available in Spanish and Cantonese free of charge if you call 415-920-5040 at least one week in advance.

      • Saturday, February 7
      • Saturday, May 2
      • Saturday, September 19

RSVP for Childcare at least one week in advance : 415-920-5040 (Check-in at 10:15 a.m.)