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.


PWCF FAMILY FUN EVENTS!

ANAHEIM ANGELS July 25 – Print Flyer      Order Tickets Online SOLD OUT!!

LA GALAXY – October 18 – Print Flyer         Order Tickets Online

 Free Summer Concerts at the Levitt Pavilion Pasadena:
PWCF will be there on July 2nd and July 30th


SAVE THE DATE!

Saturday, November 14th

PWCF’s Annual Statewide Conference will be held at the Crowne Plaza LAX


New Adult PWS Clinic

PWCF Board Member Dr. June-Anne Gold has started an ADULT PWS clinic at the University of California – Irvine

This new clinic will serve adults with PWS, focusing on providing genetic evaluation and management. Under the direction of June-Anne Gold, M.D. from the Division of Genetic and Genomic Medicine at UC Irvine, it is anticipated that the PWS Adult Clinic will be held four times per year.  (The next scheduled date is July 20th)

To learn more or be referred to the new PWS Adult Clinic call UCI’s Division of Genetics and Genomic Medicine at 714-456-5792.

 


 

Research Studies Seeking Participants: 

Energy expenditure in children with PWS while walking on a treadmill

Location: CSU Fullerton. Seeking children with PWS age 7-12 years with PWS.  

See FLYER for details. 


 ATTENTION FATHERS!!!! WE NEED YOU!

Are you a father of a child with Prader-Willi syndrome? The University of Newcastle is interested in your experiences of well-being, coping styles, and access to support, as well as your level of growth since your child’s diagnosis. If you want more information, or would like to complete the questionnaire, please follow this link  http://www.findlab.net.au/are-you-a-father-of-a-child-with-a-genetic-syndrome/


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: Claudia Shambaugh (949-824-0521  cshambau@uci.edu

  -a-child-with-a-genetic-syndrome/



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.)