Looking forward to the next twenty years

Message from the Network's President, Bill Coogan:

We've already reviewed some of the milestones of the past twenty years, and now I'm here to share some of our expectations for the milestones of the coming year and beyond. If you want to see these goals come to fruition, we need your financial support now. You can donate here: https://donatenow.networkforgood.org/xlhnetwork?code=donate%20page

Already, 2017 is shaping up to be an eventful year. We hope to announce the hiring of an Executive Director soon, who will help us to accomplish our more substantive goals. 

In addition to our regular activities that we've engaged in for the past twenty years, of representing, supporting and advocating for the XLH community (and those with related phosphate-wasting disorders), we'll be particularly involved in the following major programs:

• Organizing the next XLH Day to be held at Quinnipiac University's Frank H. Netter School of Medicine (in North Haven, Connecticut) on October 6-7, 2017. 
• Collecting data for a Natural History of XLH (and related disorders).
• Publishing educational materials geared toward children, providing age-appropriate information about XLH (and related disorders).
• Publishing Weak Bones, Strong Wills, The Stories of XLH, a collection of essays about the XLH experience. 
• Representing the XLH community (and those with related phosphate-wasting disorders) as KRN23 goes through the regulatory process. 

I'm sure you'll agree that these are all critical projects that need to be undertaken sooner rather than later, and none of them are without cost. If we're to do everything on our agenda, we need your financial support. 

Please help us to help you. Donate now: https://donatenow.networkforgood.org/xlhnetwork?code=donate%20page

Thank you.

Milestones on the way to our twentieth anniversary

In light of our anniversary, we're sharing a few milestones to indicate just how far the XLH community (including those with other related phosphate wasting disorders) has come in those twenty years.

The Network was founded in 1996. That was four years before the discovery of FGF23 (the hormone that triggers phosphate wasting)!

Beginning in 2001, the Network has represented the XLH community at the annual conference of the American Society for Bone and Miner Research (ASBMR). You can see a poster the Network presented in 2003, explaining the importance of patient organizations, at our official facebook page, facebook.com/xlhnetwork

A membership survey in 2004 revealed that the listserv was reaching approximately 350 email addresses, which, when accounting for the number of affected family members, represented close to 900 people with XLH. We currently reach somewhere in the vicinity of three to four times that many email addresses.

The first XLH Day was held in 2011 in the U.S. and in 2012 in England. Since then, there have been events in Connecticut, Indiana, California and Texas. It's coming back to the east coast for 2017, with details to follow in the new year. We're looking into options for holding many more events, all around the world.

A Clinician's Guide to XLH was published in 2011, and has undoubtedly been of assistance to clinicians and patients alike. If you haven't already read it, you can find it here for free: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3157040/

In 2015, the Network hired an administrative assistant, our first ever paid staff member. We're currently working on the search for our next paid staff member, an executive director, to start work in 2017.

Finally, the Network's corporate mission statement includes "foster[ing] the search for a cure." At the time the Network was incorporated, that seemed like something of a pipe dream, but now it's much more feasible. While a true "cure" is not yet on the horizon, a promising new treatment, KRN23, is on track for its developer, Ultragenyx Pharmaceutical, to apply for FDA approval in the U.S. in mid-2017, and comparable approval in Europe even sooner. We'll bring you updates as they're available.

We hope you're as excited about the next twenty years with the Network as we are. If you'd like to make a donation to help keep us going, you can do that here: https://donatenow.networkforgood.org/xlhnetwork?code=donate%20page

It's your turn now

You know how hard we're working to help the XLH community. Now it's your turn to support the Network.

#GivingTuesday is here! Help the XLH Network bring awareness about our disease to medical and patient communities all over the world by giving this holiday season!

Don't forget: in honor of the Network’s twentieth anniversary, donors who give at least $20 will receive an XLH Network sticker!

And don't forget your #unselfie to show your support! Take a picture of yourself holding a sign that mentions the XLH Network, #GivingTuesday, and being #unselfie! Let's take this day to show faces of XLH to people all over the world. And for those of you who prefer not to take #unselfies, we have an "I Pledged" graphic that you can use instead! You'll find it at our official Facebook page: https://www.facebook.com/xlhnetwork.

Now is also a great time to recruit a new member! If you can't give financially, you can give your support. Help one of your friends or family members with XLH become a part of the XLH Network. Ask them to like our Facebook page or join our forum.

Let's make our voices heard this #GivingTuesday! We are our best advocates!

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

Giving Tuesday for Twenty Years of Networking

On this, the twentieth anniversary of the XLH Network, we hope you'll remember us on Giving Tuesday, November 29th.

You can donate here: https://donatenow.networkforgood.org/xlhnetwork?code=donate%20page

We'd be particularly grateful for recurring (also known as "sustaining") donations that help to guarantee our long-term viability.

If you can't spare any money, or if you want to do even more than a donation, you can share your appreciation of the Network, encouraging others to consider giving to the Network over on Twitter, using the hashtags #GivingTuesday and #XLHNetwork.

Thank you.

President's message: Celebrating 20 years of the Network

From the Network's president, Bill Coogan:

As we enter this season of giving and acknowledge twenty years of accomplishments, please help us continue to help you. Donate now:  http://xlhnetwork.org/index.php/donate/

Twenty years ago this summer, Larry Winger created a website to collect information on XLH and then was joined by others to form The XLH Network. The listserv began beta testing in November 1996, and roughly two weeks later, there were subscribers from England, British Columbia, South Africa, and the United States.

A lot has changed since then. We've grown from a community of just a handful of people to a network that reaches thousands of patients and their caregivers. We've gone from not knowing what causes the phosphate wasting to the discovery of the previously unknown hormone, Fibroblast Growth Factor 23 (FGF23). We once viewed the prospect of effective treatment as more science fiction than fact, and now we have a promising new potential treatment on the not-too-distant horizon.

It seems fitting that this anniversary year has been one filled with significant accomplishments. The Network's board has worked hard to maintain all the work of previous years: educating and advocating for the various stakeholders in our community—patients, families and health care providers—by attending medical conferences, sharing what we know about XLH and offering safe places, like our forum and XLH Day, for members to help each other.

Beyond that, though, the anniversary year has also seen some major new initiatives that will come to fruition between now and our twenty-fifth anniversary. The Natural History Study will gather data about the progression of XLH throughout the entirety of patients' lives. For the more personal side of the story, we're collecting stories from our community about living with XLH, for a book entitled Weak Bones, Strong Wills, The Stories of XLH. Several other publications are in the works, including an updated dental brochure and materials to help children of various ages understand their disorder.  

Much of this work is done by volunteers or funded by grants, but there are always uncovered financial costs. The Natural History Study is part of the National Organization for Rare Disorders (NORD) Natural History Program and is paid for in large part by an FDA grant to NORD. Still, the Network will need several thousand dollars a year to insure that the study can continue long enough to provide useful data. Volunteers have donated their time to produce our various educational materials, but we'll still need to pay for their publication. XLH Days are a great experience for those who attend, but again, they can't happen without financial support.