Wednesday, December 28, 2016

Looking forward to the next twenty years

Message from the Network's President, Bill Coogan:

We've already reviewed some of the milestones of the past twenty years, and now I'm here to share some of our expectations for the milestones of the coming year and beyond. If you want to see these goals come to fruition, we need your financial support now. You can donate here:

Already, 2017 is shaping up to be an eventful year. We hope to announce the hiring of an Executive Director soon, who will help us to accomplish our more substantive goals. 

In addition to our regular activities that we've engaged in for the past twenty years, of representing, supporting and advocating for the XLH community (and those with related phosphate-wasting disorders), we'll be particularly involved in the following major programs:

  • Organizing the next XLH Day to be held at Quinnipiac University's Frank H. Netter School of Medicine (in North Haven, Connecticut) on October 6-7, 2017. 
  • Collecting data for a Natural History of XLH (and related disorders).
  • Publishing educational materials geared toward children, providing age-appropriate information about XLH (and related disorders).
  • Publishing Weak Bones, Strong Wills, The Stories of XLH, a collection of essays about the XLH experience. 
  • Representing the XLH community (and those with related phosphate-wasting disorders) as KRN23 goes through the regulatory process. 
I'm sure you'll agree that these are all critical projects that need to be undertaken sooner rather than later, and none of them are without cost. If we're to do everything on our agenda, we need your financial support. 

Please help us to help you. Donate now:

Thank you.

No comments:

Post a Comment

Note: Only a member of this blog may post a comment.