Marina Velazquez
Marina Velazquez's Fundraiser

Join me on the first annual Walk/Run for XLH!

October 8 2017 at the Farmington Canal Trail in Hamden, CT. Fundraising for XLHNetwork.

$775 towards $1,000

Hello and thank you for visiting my XLH fundraising page! 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.

I am doing my part helping others with XLH by being a volunteer test patient for a new medicine not yet in the market for the treatment of XLH. The first one especially created for it. My mom, my kids, and I suffer from it.

If you do not feel comfortable sending donations through internet, send me the check made payable to XLH Network

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!