Allison Moyer
Allison Moyer's Fundraiser

Join me in supporting those living with XLH!

You can make a difference! Please give today!

$1,210 towards $200

Hello and thank you for visiting my XLH fundraising page!

I was diagnosed with XLH when I was 17 months old, and had my first, of thirteen, surgeries when I was 3. My son, Nolan, also has XLH, but thanks to modern day medicine, was tested soon after birth and began participating in a clinical trial when he was a little over a year old. He recently completed visit #31, which showed a personal record high phosphorus level, 4.0! 🙌🏽 We are grateful for Yale Medical Center, Dr. Carpenter and the XLH network which helped connect us to them!

XLH (x linked hypophosphatemia) is a rare, chronic and progressive disorder that affects 1 in 20,000 people. There is currently no cure and no treatment; rather treatment focuses on managing complications of the illness as opposed to the underlying cause of the illness. Those living with XLH report lifelong complications, including:

  • Lower limb deformities (bow or knock-knee)
  • Waddling gait
  • Short stature or declining growth rate
  • Spontaneous tooth abscesses
  • Bone pain
  • Muscle pain and weakness

The XLH Network, Inc. is a patient led organization that serves as a worldwide support network for those living with XLH, their family members, and the clinical professionals working in the field. It is the only organization focused solely on combatting XLH and its services include, among other things:

A peer to peer community that connects patients across the country and abroad, helping them to share experiences, information and support

Patient, professional and public education

A physician referral network

Up to date information on clinical trials and research

A quarterly newsletter that keeps patients and professionals up to date on treatment news

Fact sheets, publications and educational literature for patients, physicians and dentists

A speakers bureau consisting of patients, family members and clinical professionals

Healthcare advocacy

The fostering of research including the Natural History Study, an ongoing research project incorporating patient clinical data that will help future researchers study how the disease develops over a patient's lifetime.

My goal is to raise as much as I can to help The Network accomplish its mission. I hope you will join my efforts by making a donation and helping to spread the word!