PCD Foundation Family Education Weekend Rescheduled

New Date December 4-6, 2009, Buffalo New York

IMPORTANT REGISTRATION INFORMATION
 

As many of you know, we were forced to cancel Family Education Weekend last summer due to an outbreak of H1N1 influenza in the region. Because the summer program included the opportunity to participate in a research project related to creating a quality of life tool, we were committed to rescheduling the event before the end of the year.  With H1N1 vaccination more readily available, we have gone ahead and set up a new date: December 4-6, 2009.  We realize this is short notice, so to make it as simple as possible, here is what you need to know:

*Travel grant awards made for the summer event WILL BE HONORED.  If you received a travel grant and intend to attend the December event, please contact Lynn Ehrne or Michele Manion (contact info below) ASAP.

*The deadline for receiving early bird registration discount is November 14th.

*Rooms must be booked by November 23rd to receive the discounted rate.
 

*All attendees, regardless of whether or not you are paying a registration fee MUST complete a registration form and SIGN the cross-infection waiver.  Send the form in without a fee if your registration fee is waived.  We absolutely must have registration information and a waiver for every attendee--NO EXCEPTIONS.
 

 
Click on this link for the REGISTRATION FORM.
 

Quality of Life Focus Groups--An Opportunity to Participate in Research
 

In addition to our regular educatonal program, a special feature of this Family Education Day is the opportunity to participate in a research project that consists of focus groups that will help PCD researchers develop a quality of life survey tool to be used in clinical research studies.  This tool is essential to future funding for clinical research, as the National Institutes of Health (NIH) now requires that quality of life assessments be included in studies they fund.  The focus groups will be run by Alexandra Quitner, PhD and her colleagues from the University of Miami.  Dr. Quitner and her team have created and validated similar tools for use in cystic fibrosis, non-CF bronchiectasis and other disorders. The focus group sesssions will be held Saturday morning, Dec. 5 and will consist of separate discussion sessions with 3 groups: Young children; teens and young adults; and parents.  While people outside of these three groups will not be included in formal focus groups, informal input from all groups will be sought in other discussion venues, including our Saturday dinner presentation.