It is really important that I go to this conference, because it is my 10th anniversary as a charter member of PWSA Advisory Board. We are having special recognition of this milestone at a reception before the general meeting of the conference. I also have been asked to perform a song I wrote about people with disabilities at the conference. The conference itself is very important for learning about new research findings and medical developments related to PWS.
As part of our activities, the Advisory Board provides support for those with PWS, their parents, and for other community members who live nearby who may be too sick to attend. The Board's purpose is to share and generate ideas for the main Association and to facilitate workshops. We are in contact with each other during the year and discuss what PWS kids want from the PWS organization. I have so much fun hanging out with my friends, because I don't have anybody in my state (Maine) with PWS for a friend.
For those who may not know about PWS, it is a rare genetic condition that affects the way the hypothalamus regulates everything from hormones to behavior and even body temperature. People with PWS don't get the message from the hypothalamus when they are full. And as a result we are hungry all the time. The resulting anxiety makes us want to forage for food. To control this impulse, people with PWS have to have cupboards and refrigerators locked, because there is no cure. We have to live with 24/7 supervision to monitor our food intake. Please see the attached public service announcement video I made for more information.
The conference will be held in Orlando, Florida November 7-9, 2013. The funding will be used to support me as well as an aide (as I need constant, 24 hour supervision due to my syndrome). Please help me attend this conference, as it would mean the world to me. And thank you for your kindness and generosity.
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