Wednesday, June 27, 2018

Executive Director, Rachael Jones

We are excited to announce that Rachael Jones, a fellow XLH Network member, has agreed to assume the position of Interim Executive Director of the XLH Network effective with the resignation of Carol Lafleur at the end of this month. Rachael brings a wealth of nonprofit experience to this interim position, and as an XLH patient herself, she brings firsthand knowledge of what it means to live with XLH.
Rachael was born in Colorado and recently moved back to Colorado after spending most of her life in various states in the Southwest region. Rachael is married and has two young children. She spent several years as an administrator for non-profit organizations. She also loves to write and spent a couple years editing and writing curriculum for elementary students.
Rachael is passionate about the work that The XLH Network, Inc. does for XLH patients and caregivers. After attending XLH Day in 2013, she became involved in subsequent XLH Days to help with children’s programs. The daughter of a spontaneous case, Rachael was diagnosed at birth with XLH, and her brother, two nieces, and her own two children also have the condition. In all, there are seven people in her family who have XLH. Rachael desires to find more ways to connect XLH patients and families, and as part of her passion for children and writing, she plans to help develop materials for children with XLH.
Please join us in welcoming Rachael!
The XLH Network, Inc., Board of Directors

Monday, June 18, 2018

Help ensure access to life-saving treatment!

The regulating authority in England is set to decide, incorrectly we believe, that even though burosumab is safe and effective, it will not be made available to patients in the UK for financial reasons. There is a short window of opportunity (just until July 6) for patients' voices to be heard (from anywhere in the world, but especially from the UK), so speak up now! And share this post and ask your friends in the XLH community to act too!
To comment, you must register at NICE using this link.
The evaluation committee is interested in receiving comments on the following:
  • How do symptoms (both physical and psychological) and treatments (including any surgery) you or your child experienced in childhood affect you or your child in adult life? 
  • For children on standard treatment (phosphate and calcitriol), what are the side effects of taking current treatment (phosphate, calcitriol)? How is that a burden for the child and your family?
  • If you have a child who is 1-12 years old and on burosumab, please explain how this treatment is currently helping in the short-term and how you expect that it will help in the long-term.
  • If you have a child who is 13-17 years old and on burosumab, please explain how this treatment is currently helping in the short-term and how you expect that it will help in the long-term.

We believe in the power of our combined voices, and there is a reason NICE provides a window for discussion. It is imperative that we stand up for children and families in the UK and that we do so now. Please join us.
Finally, if you have any questions, feel free to email: oliver.gardiner@xlhnetwork.org

Resignation of Executive Director

The Board of Directors wishes to inform our membership that Carol LaFleur will be resigning her position as Executive Director effective at the end of the month. It has been a pleasure to get to know Carol over the past fifteen months and we thank her for her efforts and for the positive moves forward that she has helped accomplish during her tenure. I am sure you join us all in wishing her well in her future endeavors and our thanks for her dedication to the Network and the XLH patient community.

Thursday, June 7, 2018

XLH Day & Symposium October 4-7, 2018

An official message about XLH Day from the Founder and Chair of XLH Day 2018 Elizabeth Olear

This year we are combining XLH Day with a Symposium focused on the adult symptoms and complications of the disease for the FDA. In the coming days and weeks we will be providing complete information about the events of "XLH Weekend." 

What I can share today is that the venue for both the Symposium and XLH Day is the Hyatt Regency Baltimore Inner Harbor. https://www.hyatt.com/en-US/hotel/maryland/hyatt-regency-baltimore-inner-harbor/bwirb

Guest Rooms have been negotiated to start at $129/night. If you would like to reserve your guest room ahead of the official release of the block, please send an email to: elizabeth.olear@xlhnetwork.org 

We are looking forward to seeing you in Baltimore! Please check back here and at the OFFICIAL XLH NETWORK FACEBOOK page for the ONLY places where accurate and up-to-date info will be posted.