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.

What will you do to raise awareness on Rare Disease Day?

Visit the Rare Diseases Day website for ideas.

Lynne Bird, M.D., Director of the PWCF-funded PWS Clinic at Rady’s Children’s Hospital in San Diego, is now recruiting for the phase 3 Beloranib trails!!

The minimum criteria is persons age 12-65 who are already obese. Please see the following flyers for more details:

Belorabnib Recruitment Flyer

Beloranib FAQ

Beloranib Zafgen BestPWS Brochure

If your child or adult meets the minimum criteria and you would like more detailed information, please contact the PWCF office or contact Rachel Winograd, RN, BSN at Rady Children’s Hospital 858-966-8453 or rwinograd@rchsd.org 

ASICS 30th


We’re happy to announce that PWCF has once again been selected as an official charity of the 2015 ASICS LA Marathon!

Download the 2015 ASICS LA Marathon Flyer,  or visit the LA Big 5K or LA Marathon event pages for more details.

Follow the TeamPWCF Facebook page.

California State University at Fullerton is recruiting for a new study on movement difficulties of children who have PWS.  

They are seeking children aged four to seven who have a diagnosis of PWS.  See the flyer for more details.

University of California, Irvine is currently recruiting for two new clinical trials:

Diazoxide Clinical Trial - Trial is starting now:

              The purpose of this study is to evaluate the safety and effect of a drug called Diazoxide on hyperphagia and energy expenditure in PWS patients.

    • Who can participate:
        • Anyone with a confirmed diagnosis of PWS
        • Age 10 – 20 years old
        • BMI (Body Mass Index) > 95% or Body Fat >35%
        • Those receiving and not receiving growth hormone

After a screening visit to qualify the patient for the study, patients enrolled in the study would be expected to complete 8 visits over 20 weeks.  After a baseline visit, all patients will receive the active drug for a period of 10 weeks followed by 4 weeks in which they may or may not be switched to placebo. Patients will be compensated for each visit.

Oxytocin Clinical Trial – Trial to begin soon, but they are recruiting participants now

The purpose of this randomized placebo controlled pilot study is to determine if intranasal administration of oxytocin will result in reduced anxiety, decreased appetite, and improved socialization behaviors in children with Prader-Willi syndrome.  We will also evaluate the quality of sleep for PWS children and how it relates to school function and family relationships in these children.

      • Who can participate:
        • Anyone with a confirmed diagnosis of PWS
        • Age 5 – 11 years old
        • Those receiving growth hormone

For more information on either of these studies contact:

Marie Wencel, Clinical Research Coordinator, University of California, Irvine
Email: mwencel@uci.edu * Tel: (949) 824-0521
Virginia Kimonis, MD. MRCP, Professor, Dept. of Pediatrics, UC Irvine Division of Genetics and Genomics  Email: vkimonis@uci.edu * Tel: (949) 824-0571

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.)