Valentine's Day hearts

How's your heart?

While some early research (of limited value due to the tiny number of patients studied) suggested a possible correlation between XLH and heart disease, some very recent research suggests that FGF23, the hormone that XLHers have in excess, may actually prevent/slow heart disease! https://phys.org/news/2018-01-anti-aging-hormone.html

The research is far too preliminary to be able to draw any conclusions about the XLH population's heart health. We hope our natural history study, launching later this year, will help us understand more about the incidence of heart disease in the XLH community.

In the meantime, take good care of your heart today and every day of the year!

Happy holidays!

We wish you happy holidays and a healthy new year!

You can see our holiday card at the official facebook page, https://www.facebook.com/xlhnetwork

Meanwhile, the board is taking a brief break to get prepared for what we hope will be a life-changing year for the entire XLH (and related hypophosphatemias) community.

Happy Independence Day!

We're all on vacation, but want to wish everyone in the U.S. a great Independence Day, and to everyone else we wish the best of your July holidays, including but not limited to:

Bastille Day Canada Day
Constitution Day
Day of the Sea
Emancipation Day
Family Day
Freedom Day
Heroes' Day
Liberation Day
National Day
Orangeman's Day
Republic Day
Revolution Day
Somers' Day
St. Peter's and St. Paul's Day
Union Day
United States Friendship Day
Unity Day

Warm winter wishes

Your hard-working board members are taking a brief holiday break this week and next, but we'll be back in the new year, representing the global XLH community (including those with related phosphate wasting disorders).

You can see our holiday card over at our official facebook page: facebook.com/xlhnetwork

Giving thanks

Three things for the XLH (and ADHR, ARHR and TIO) community to be thankful for this year:

1. Hope for the future, with the encouraging data coming out of the KRN23 trials and other research into understanding the metabolic process that leads to phosphate wasting in X-Linked Hypophosphatemia (and the related autosomal conditions, as well as Tumor Induced Osteomalacia.

2. The great attitude of the members of our community. For one example, check out Cheryl's story here: http://ultrarareadvocacy.com/patient-journeys/ And if you want to meet more people who share your experiences (as well as getting the latest information on treatment), mark your calendar now for XLH Day 2017, which will be held in Connecticut on October 6-7.

3. Twenty years of support and advocacy by the XLH Network! And while you're thinking about how much you appreciate the Network, here's a reminder that if you're doing holiday shopping at Amazon in the coming month, you can show your support by enrolling in the Smile program and choosing the Network as your beneficiary. We get a percentage of your purchase, at no additional cost to you! Find out more here: https://smile.amazon.com

Happy holidays

The Board is taking a tiny break from year-end fundraising and our other duties to enjoy the holiday week (but it's not too late to make your donation here: http://xlhnetwork.org/index.php/donate/ ).

You can see our festive pictures in a card posted at our official Facebook page (facebook.com/xlhnetwork) and don't forget to like our posts there on a regular basis, so you'll keep seeing our information in your feed. (If you don't like/share/comment on one of our posts at least once a week, Facebook won't keep sending the posts to your feed.)

We'll be back next week, rested and re-energized (or frazzled, but still determined to do what needs to be done by the end of the year)!

Gratitude

The Network's Board of Directors is grateful for our members and their support (both financial and otherwise), which helps us to further our mission to promote XLH awareness and education for affected families, medical professionals, and the community at-large; to support physicians and other providers of medical care for better diagnosis and treatment; to create resources and a community for affected individuals and their families so they can understand and cope with the complications of the disease; and to foster the search for a cure.

May you all have a wonderful day tomorrow, filled with laughter, good food and the best of times with loved ones.

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)