Chapter Leaders Committee Announcement

PWSA (USA) has been listening to the feedback provided to the organization and we are excited to announce that throughout 2013, we have:

  • Participated in IEP meetings for students with PWS across the country to answer questions about PWS and recommend PWS appropriate educational and behavioral strategies.
  • Distributed hundreds of informational packets to care providers, medical, and school professionals.
  • Written hundreds of advocacy letters to support access to benefits for people with PWS.
  • Offered an understanding and supportive ear when parents need a place to talk.
  • Created the new e-letter School Times that in 4 months has a subscription list of over 400 people including both parents and school professionals.
  • Completed the Wyatt Special Education Advocacy Training – the first national PWSA (USA) Special Education Training.
  • Utilized Educational and Residential consultants to provide expert training to schools and residential programs across the country.
  • Assisted children and adults in crisis to receive treatment at the PWS program at the Children’s Institute in Pittsburgh.
  • Designed creative new resources such as the Older Child Package to assist families and caregivers of PWS.
  • Joined advocacy efforts to promote the support needs of people with PWS and their families.
  • Since 2008 PWSA (USA) has spent over $1,000,000 on Prader-Willi syndrome research sponsoring over 50 projects in a 10-year period.  PWSA (USA) keeps the momentum of research going by funding new and innovative research projects, maintaining the world’s largest PWS-specific medical database available to researchers and other professionals, sponsoring groundbreaking conferences like PWSA (USA)’s National Conference, and bringing together scientists of all disciplines for a Scientific Day conference.

We are excited to build on the success of 2013 and in the next few weeks you can expect to receive a call from a member of the Chapter Relations Committee. The purpose of this call is to discuss what PWSA (USA) has planned for 2014 and share our excitement about things to come. We look forward to talking to you soon!!

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About pwsatoday

PWSA (USA) is an organization of families and professionals working together to raise awareness, offer support, provide education and advocacy, and promote and fund research to enhance the quality of life of those affected by Prader-Willi syndrome.
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