On The Move 2014


Spring is just around the corner and most of you know what that means….. It is Prader-Willi Syndrome Awareness Season!  Spring is the main time that families and friends around the country spring into action for Prader-Willi Syndrome Association (USA). By hosting, participating and fundraising for “On The Move” we continue to make a positive difference in the lives of people and families living with PWS.

What is “On The Move”?

On The Move” s an awareness and fundraising campaign that:

  • Is designed to increase awareness of PWS and raise funds for PWSA (USA) and state chapters.
  • Grows support of the PWS community as a whole and Prader-Willi Syndrome Association (USA)’s numerous important family support services.
  • Includes an element of physical activity
  • Is undertaken by state chapters, affiliates, individuals and groups as a representative of the PWS community.

Why is “On The Move” important?

“On The Move” is very important in raising awareness of PWS and funding for PWSA (USA)’s key operations of support, research, education, awareness and advocacy.  Funding from “On The Move” is essential because it helps Prader-Willi Syndrome Association (USA) 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 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 PWS.
  • Join advocacy efforts to promote the support needs of people with PWS and their families.
  • Spend over $1,000,000 on Prader-Willi syndrome research (in a 5 year period)
  • Sponsor over 50 research projects in the past 10 years.

Why have an “On The Move” Event?

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.

One great thing about the On The Move is you get to choose where your funds go! If you want 100% to go to support that is great! If you want 100% to go to research perfect! If you want to split the funds between different services, no problem!

What can I do?

Plan An Event: Want to plan an event but don’t know where to start?   Through Firstgiving.com you can set up your event, ask participants for donations online through emails and social media, and registrations are automated through the process.

If you are having an OTM Event:

  1. Submit your PWSA OTM Event Agreement  to bkarp@pwsausa.org
  2. We will create a FirstGiving event at www.firstgiving.com/PWSAUSAand send you a log-in & password
  3. Log-in and add event information and pictures to customize your event page
  4. Send emails or post to your social network using the easy to use tools for registration and donations

Share Your Event: Already hosting an event? We would love to hear about it. Submit your event here and we will post it on our website, share it in our community blog and social media outlets .

Not hosting an event but still want to help out? Here are a few options:

Fundraise Online:

Want to raise awareness and money for Prader-Willi syndrome but you don’t have time for an event?

That’s fine!  Firstgiving.com makes it easy to spread awareness and fundraise whether you are having an “On The Move “event or not.

If you want to set up your own fundraiser/awareness page online for FREE:

  1. Go to “PWSA On The Move 2014
  2. Click the “Fundraise” Button
  3. Set up your own fundraising page and start sharing with friends and family through the simple email and social media tools

Attend an  Events Across The Country  

March 29, 2014 – Running Of The Bears 5k – Vestal, NY

April 6, 2014 – Florida  On The Move – River Ranch, FL

May 3, 2014 – 1st Annual Fighter Jhett Classic – Indianapolis, IN

May 3, 2014 – PWANY Walk – Syracuse, NY

May 10, 2014 – 4th Annual On The Move – Oconomowoc, WI

May 17, 2014 – Walk N Roll – Middletown, CT

May 18, 2014 – On The Move Dinner -Queens, NY

May 31, 2014 – Hunter Lens 5th Annual PWSA Golf Event – Lakeville, MA

Visit our website to see all the events across the country

Advocate For On The Move: 

For more information on how you can advocate for “On The Move” call Ben Karp, Communications Specialist for PWSA (USA) at 941-312-0400 or email bkarp@pwsausa.org

Order Your “On The Move” Logo Items Today

The PWSA (USA) “On The Move” Logo Items are a unifying symbol of hope and awareness in our community.  Last year, hundreds of “On The Move” logo items were distributed nationwide and were worn by advocates just like you in support of PWS Awareness.  This year we have a new logo and new products that we are sure you will enjoy! To order today contact Pam Ferrara at 941-312-0400 or email pferrara@pwsausa.org.

We look forward to celebrating this “On The Move”  Season with you and our entire PWS community!

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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