JoBeth Souza
JoBeth Souza's Fundraiser

We can make a difference for those living with XLH!

Join me in raising awareness for Rare Disease Day and XLH!

$1,035 towards $1,000

Hi everyone!

Rare Disease Day is February 28. As many of you know, Karabeth is affected by a rare disease called X-linked hypophosphatemia (XLH). She was diagnosed at 15 months and has lived with it her whole life. XLH is a whole-life, whole-body disease that at present has no treatment that addresses the underlying cause of the illness. I am hopeful that may all change in 2018 and I am asking you to join me in making sure The XLH Network, Inc. has the resources it needs to serve patients like Karabeth.

The XLH Network., Inc. is the only patient advocacy organization in the world dedicated to serving those living with XLH. It has been an invaluable resource to me and my family and works hard to provide resources to patients, family members, clinicians and researchers. Up until now, there has been no treatment for XLH that addresses the underlying cause of Karabeth's illness but with a new promising drug in clinical trials, that may all change this year! It's so appropriate that the theme of this year's Rare Disease Day is research and I want to help make a difference for the XLH Community. That's why I created a fundraiser to support THE XLH NETWORK INC. This organization provides hope for me that Karabeth may one day live pain free, have beautiful straight legs, be free of constant knee surgeries and in the future not have to worry about her children being impacted by this rare disease!

Check out my fundraising page and consider making a donation to help me reach this goal!

Giving online is easy and fast, and your support will make a real difference. I appreciate your help!