Here are the current details via Tanya Johnson from FPWR www.fpwr.org (thank you for all your hard work Tanya, Keegan & Susan!):

We are taking Prader-Willi Syndrome to the White House Wednesday, March 6, 2013!

Thanks to your votes in the Let’s Move video challenge, our video was selected a winner and we are sending two representatives to the White House for a Let’s Move event! Theresa Strong, Research Director, FPWR and Keegan Johnson, Executive Director will be attending the official Let’s Move event and meeting with Washington officials to discuss how the PWS community can lead the fight against obesity

We would like to celebrate this victory with EVERYONE on March 6th! Local families are encouraged to meet us on Capitol Hill Wednesday afternoon to visit the office of their representative and discuss how PWS can help in the fight against obesity. At 5 PM we will convene for a group photo after which families are invited to attend a gathering at a nearby location where we will share the outcome of our adventure and our next steps. Save the date and plan to attend! Additional details will be coming soon!

If you would like to attend this event, please RSVP to susan.hedstrom@fpwr.org as soon as possible. Let us know where you live and how many people will be joining you and we can help make arrangements with your congressional representative. If you plan to join us for our evening event only, please let us know so we can plan accordingly.

Can’t make it to the actual event but still want to participate in our adventure? Please sign up here so you can participate in crafting the message we deliver to the White House, receive updates, pictures, videos and more!

You can join us in our White House Adventure and take one SMALL step to eliminate the challenges of PWS!