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“On The Move” is a campaign designed to increase awareness of PWS and raise funds for PWSA (USA) and state chapters. It grows support for the PWS community as a whole and Prader-Willi Syndrome Association (USA)’s numerous family support services. On the Move events typically include an element of physical activity. Anyone can organize and participate in an OTM event and they can take place anytime throughout the year.

“On The Move” is important in raising awareness of PWS and funding key operations of support, research, education, awareness and advocacy that PWSA (USA) provides. Funding from “On The Move” is essential because it helps us meet the multiple support needs of people living with PWS. In the last year alone PWSA (USA) was able to do the following with the money raised from “On The Move” activities:

  • Participate in school IEP meetings for students with PWS across the country (by phone or in person) to answer questions about PWS and recommend PWS appropriate educational and behavioral strategies.

  • Distribute hundreds of informational packets to care providers, medical, and school professionals.

  • Write hundreds of advocacy letters to support access to benefits for people with PWS.

  • Offer an understanding and supportive ear when parents need a place to talk.

  • Create the new e-letter School Times which in 4 months has a subscription list of over 400 people including both parents and school professionals.

  • Create and complete the Wyatt Special Education Advocacy Training – the first national PWSA (USA) Special Education Training.

  • Utilize educational and Residential consultants to provide expert training to schools and residential programs across the country.

  • Assist children and adults in crisis to receive treatment at the PWS program at the Children’s Institute in Pittsburgh.

  • Design creative new resources such as the Older Child Package to assist families and caregivers of  people with PWS.

  • Join advocacy efforts to promote the support needs of people with PWS and their families.

  • We have provided over 50 research grants

  • Sponsor over 50 research projects in the past 10 years.

Your involvement in OTM as an event organizer, fundraiser, and/or participant empowers you and educates others. With the money you raise from your event we are able to continue and develop our support, research, education, advocacy and awareness capabilities. Our goal is to hold 40 OTM events during our 40th year!  We are continuing to help save and transform lives and On The Move is a vital part of our efforts.

Here are a few reasons to conduct an On The Move event:

  • Raises critical funds for vital research, family support, advocacy, awareness, and education

  • Win great prizes!

  • Includes an element of physical activity and community camaraderie

  • Great way to get friends, family, neighbors, co-workers together for a fun event

  • All of the funds raised will go towards helping those affected by PWS both locally and nationally

  • Can be held by state chapters, individuals, and groups

  • Terrific way to spread awareness and for local chapters to gain visibility

  • You can raise maximum funds for minimal expense

  • PWSA (USA) development team is here to help you as you move along in the process; we can provide the support needed to make your event great

  • We can set up a personalized webpage for you and for your participants that will allow you to collect online donations

  • Our event kit and staff support provide the direction you need to organize a successful event

Organizing Your Own Event

Planning your own event is a great way to be a part of On The Move. A community walk is a fun event where people in your local community can come together to support PWS in a friendly atmosphere. While we focus on walk events because of their proven success, our staff can also help you with other fundraisers like, golf, bowling, and dinner/auction events. We will create a personal webpage for you to use to solicit donations online and to spread the word through social media and emails. If you’re planning to have your own event:

  • Contact PWSA (USA) to obtain the On The Move event packet which will provide all of the necessary information and resources to have a successful OTM fundraiser

  • Submit the OTM Event Agreement (within the event packet) to lgilliland@pwsausa.org

  • We will create a FirstGiving event page for you and list your event on our national and On The Move websites

  • You can customize your event page with pictures and personal stories (if you are not great with computers, we can do it for you!!)

  • Spread the word by sending out emails and posting to your social media networks with the easy to use tools for registration and donation

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