Monday, December 29, 2014

Thank you!

Message from the XLH Network's President:

This has been a tremendous year of growth. We've made incredible advances in educating members, doctors, and the medical community about XLH and its impact on our everyday life. It’s an exciting time for everyone with XLH, especially with a new treatment in development for the future.

Thank you for your dedication and support of the XLH Network. There is still time to make your year end DONATION and support work for a better future for ourselves and future generations. You can help us continue to make a difference in the lives of people with XLH.

The Board of the XLH Network, Inc. is excited that 2015 has the potential to bring real change, and we hope you are as well. Thank you for your generosity and investment in the work we do on behalf of families with XLH.

 Becky Mock, President

Monday, December 22, 2014

Happy holidays!

We wish you a happy holiday season and a healthy new year.

Left to right: Chris Younger, Kathy Buchanan, Gin Jones (front), Bill Coogan (back), Geoff Edelson, Oliver Gardiner and Becky Mock. (Not pictured: Joyce Inman)

Wednesday, December 17, 2014

What XLH and the Network mean to you

You can now see the remainder of the favorite pictures in both the adult and child categories of our photo challenge over at our facebook page:

Before you click on over, or while you're checking out all the pictures, we hope you'll take some time to think about what XLH means to you, and what the Network means to you.

You can make a difference in the lives of XLH patients by making a tax-deductible donation today. Just go here for instructions to pay by check, credit card, PayPal or even by donating stock:

And now for the remainder of the excellent pictures of what XLH means to our members:

In the "child" category, we have Nathan Carpenter, who sees himself flying, with colours that suggest a magical world, and Payton Donnelly, whose picture reflects companionship, friendship and understanding.

In the "adult" category, we have Lizzie Halstead, who represents family and joint achievements, and Sheila Hunter, where the curved mirror has her viewing herself from all aspects and also enables her to create her own world.

Thanks to all the participants in the challenge, and, once again, thanks to our guest judge Laura Hensser.

Wednesday, December 10, 2014

A sneak peak at the photo challenge results

Three months ago, we challenged our members to take a picture (or three) that reflected the theme of "What XLH means to me."

With the help of our guest judge, Laura Hennsser, a photographer and a Curatorial Project Assistant with London's Tate Modern, we've narrowed down the options to three favorites in each of two categories: one for adults and one for children.

Because of the wide range of XLH experiences reflected in the pictures, all of which were valid and compelling, we just couldn't narrow the finalists down any further, so we're declaring all six to be equal winners.

You can see one from each category (adult and child) today at facebook. The adult picture is from Mary Hawley, and captures the idea of having nothing standing in her way, climbing to the top and achieving. The child picture is from Aimee Richardson and depicts being super, successful and strong.

Check back to see the remaining four images next week. Watch for them first in our newsletter and then at facebook.

Before you click on over, though, a quick reminder: if you're doing some end-of-year financial planning, the Network is now able to accept donations of stock. The information for how to make this type of donation is here:

Thursday, December 4, 2014

Last chance to participate

If you want to have some input into future research and the clinical understanding of XLH patients' experiences, you're running out of time to participate in the Burden of Illness survey. The last day to accept input is this coming Monday, December 8.

It's a busy time of year, so don't wait or you'll probably get distracted with other things. Follow this link now:

And note that the survey is available in French now, in addition to English!

Tuesday, December 2, 2014

Simple options for #GivingTuesday

The Network has been doing its job all year, and now, on #GivingTuesday, we're asking our members to let us know our work is appreciated.

If you haven't donated yet this year to keep the Network moving forward, how about doing it now? Here's the link with all the details:

If you have donated already (thank you!) or if a financial donation just isn't in your budget right now, we could still use your help, and it won't cost a penny.

If you're a Twitter user, just follow us: @XLH_Network (or put XLH Network in the Twitter search box). Then reTweet (or favorite) some of our posts, so your followers know about us and what we're doing. With the way Tweets spread exponentially, this will help us reach out to more XLH patients and treating physicians.

If you don't do Twitter, but you have a Facebook account, then like our page: (and remember to like, share or comment at our posts, so you'll keep getting them in the future). This too will  expand our reach to people who may not know about the Network.

That's it. Just five seconds of your time. Seems like a pretty good investment in making sure the Network will continue to work for you, don't you think?

Help us today, on #GivingTuesday: Give money. Give knowledge. Give hope.