Wednesday, January 28, 2015

Thanks for the support!

We are all excited about the possibilities that 2015 brings for families with XLH, and we hope you are too! But as this first month of the year comes to an end, we wanted to express our appreciation for all of you who gave to our end-of-the-year campaign. We cannot do this without you and your generosity, and we are excited to say that we exceeded our fundraising goals this year!

We held our first-ever Giving Tuesday event—bringing the Network and the families we serve to the attention of the nonprofit community. Our number of end-of-year donors increased by 29% this year. And, ultimately, it is the percentage of people who give to the network that matters. We need to be able to show potential funding organizations that our members value what we do.  And last, but not least, our end-of-year giving amounts for 2014 increased by 92% compared to 2013!

So, thank you for making sure that we ended 2014 on a high note, and let's not stop in 2015. There will be numerous opportunities for you to give throughout the year this year, and we hope you will consider giving so that you can help us host additional XLH Days, provide additional educational materials to our members and physicians, and continue to advocate for families dealing with XLH on all fronts.

Thank you for assisting us in our efforts to raise awareness and one day find a cure for XLH.

Wednesday, January 21, 2015

Meet Director Kathy Buchanan

This week, we've got an interview of Board Director Kathy Buchanan. 

1. How did you get involved with the XLH Network, and then how did you become a member of the Board of Directors?

I had searched the internet years ago trying to find more information on XLH, though at that time I knew it as hypophosphatemic rickets. I didn't find very much, at least not anything helpful. Then when my son, who was diagnosed with XLH at age 3, was facing surgery while he was in college, the nurse suggested I look again. That's when I found the XLH Network. I immediately joined and was a member for about 4 years when Joan Reed and Joanne Joseph were trying to incorporate and form a board of directors. I applied for a position on the board and was at the very first board meeting in Syracuse, NY in March, 2005. I was elected Secretary of the Board of Directors and held that position for over 6 years. I was President for one year in 2012 and have been a member-at-large on the Board for the last 2 years.

2. What's your "super power" -- the special skill, knowledge or experience that you bring to the board?

I have worked with other non-profit organizations in the past in various leadership roles that helped prepare me for working on the XLH Board of Directors.

I am also a registered nurse and have worked with clinical research trials for over 20 years, though not with XLH. I am particularly interested in the clinical trials going on now for XLH, though, and find it thrilling to finally hope for some new treatment options for XLH that will be more effective and safe.

3. What XLH project are you working on now that you're particularly enthusiastic about?

Right now, I am the committee chair for the Bylaws committee and just completed a major revision to the bylaws after a review by lawyers in New York state where we are incorporated to make sure we are following all rules and guidelines set forth by the state.

I am also on the Membership committee and am in charge of new member subscriptions as well as member requests for referrals to physicians who have experience treating XLH patients. This keeps me quite busy, but also gives me the opportunity to speak one-on-one with our members from all over the world and get to know you all a little better. No matter where we live, we all face the same challenges in dealing with everyday life with XLH for ourselves and our children. The world becomes a little smaller when you can talk to someone in another country or even another continent who is dealing with the same issues you are! It is my hope that anyone dealing with XLH will do an internet search like I did (and probably like you did) and find the XLH Network, Inc.

Wednesday, January 14, 2015

Website in translation

We've always been an international organization, founded by XLHers in the United States and the United Kingdom, but we're becoming more global every day.

Most recently, we've added a translation feature to our website. You'll find it in the upper right corner, where you can click on the arrow and choose from almost a hundred languages!

It's a lot of fun to use (haven't you always wondered what they call "hypophosphatemia" in Sweden? According to Google, it's hypofosfatemi.), but we're also hoping it will help non-English-speaking XLH patients and their families. It's not perfect, but it helps.

If you know anyone who doesn't read English comfortably, please let them know they can get our website translated in a wide variety of languages now.


Siempre hemos sido una organización internacional , fundada por XLHers en los Estados Unidos y el Reino Unido, pero nos estamos volviendo más global cada día .

Más recientemente , hemos añadido una función de traducción en nuestro sitio web. Lo encontrará en la esquina superior derecha , donde puede hacer clic en la flecha y elegir entre ¡casi un centenar de idiomas !

Es muy divertido de usar (¿te has preguntado alguna vez como llaman " hipofosfatemia " en Suecia? Según Google , es hypofosfatemi.) , pero también esperamos que le ayudará los pacientes de XLH que no hablan Inglés y a su familias.  No es perfecto, pero ayuda. Si conoce a alguien que no lee Inglés cómodamente , por favor hágale saber que pueden conseguir nuestro sitio web traducido en una amplia variedad de idiomas ahora.

Wednesday, January 7, 2015

The tooth fairy is calling

We need teeth!

Don't worry, we don't want you to pull out healthy ones and send them to us, but if you're an adult XLH patient who's having a tooth extracted in the next few weeks, we could use it for research.

One of our SAB members, Carolyn Macica, PhD, is researching the mineralization of our teeth, which ought to provide useful information about mineralization in our bones. She has already studied a number of baby teeth, which are relatively easy to get from the tooth fairy (although she could use some more if you have them to send), but adult teeth are more difficult to come by.

So, if you're planning to have a tooth pulled soon (or perhaps your young-adult child is having wisdom teeth pulled), please consider asking the oral surgeon to keep the teeth, so you can send them to Dr. Macica for research. Or if you kept teeth that were pulled in the past, those can be used for research too.

Dr. Macica needs them ASAP, preferably by the end of February, so if you're planning to send them after that, please check the Network's website where we list clinical trials ( to see if she still needs more teeth.

Here's the address to send the teeth:
 Dr. Carolyn M. Macica
Quinnipiac University
Frank H. Netter School of Medicine MNH 311H
275 Mt. Carmel Avenue Hamden, CT 06518-1908

She would be happy to reimburse the North American postage cost, if you include a note with the amount and your address.