Thursday, March 31, 2016

What can XLHers do?

XLH patients probably won't be playing professional basketball (until we find a cure or at least an effective treatment), but for anything that doesn't require height, XLHers can and do participate in a wide variety of careers and activities.

We recently asked a number of XLHers about their  careers and activities, and got some great responses.

It shouldn't surprise anyone to hear that XLHers engage in a number of professional careers, including doctors, lawyers, teachers, nurses, writers, researchers, engineers and assorted computer/tech-related jobs. We also heard from a professional chef, a loan officer, a real estate agent, a mental health therapist and a master florist!

It's a little more surprising, given the physical limitations experienced by many adults with XLH, that some of them engage in strenuous activities like building rock walls, logging, shooting targets, biking, horseback riding ("even if I can't do all the things on horseback I wish I could, any riding is better than no riding"), drumming ("I've fractured my arms a lot since I started drumming, but it's too much fun to avoid doing"), and even triathlon competitition (jointly with her husband; he does the running, and she does the biking and swimming).

Bottom line: XLHers can do just about anything they want to do!

Tuesday, March 29, 2016

Shopping for the Network

Did you know that there are a number of ways to give to the XLH Network, Inc. without actually writing a check? Obviously we hope you will consider donating throughout the year, and, of course, you can give appreciated stocks or work with your employer to ensure matching gifts to the Network. But there are also a number of ways that your online experiences can benefit the Network without costing you anything.

The XLH Network is one of the many charitable organizations registered with the Amazon Smile program. If you are an online shopper with Amazon, you can set up your account so that Amazon gifts .5% of your purchases to the Network! We don't know about you all, but the ease of online shopping has changed our lives for the better. Amazon Smile allows you to make purchases you were going to make anyway and a small portion of the amount you spend will go to the XLH Network.

To shop using Amazon Smile, simply go to On your first visit to the site, you will need to select the XLH Network as the charitable organization of your choice before you begin shopping. The site will remember your choice, and every time you shop with Amazon you will benefit our organization and the work we are doing on behalf of families with XLH. If you are already an Amazon shopper, we hope you will consider selecting the XLH Network as your charity of choice and use Amazon Smile.

Another option is to shop using iGive. When you set up an account with iGive and go through their portal to shop at more than 1,700 online stores, a portion of your purchases will be donated to the XLH Network. It is quick and easy, and, once again, you are simply making the same purchases you would make otherwise, but you are benefitting the Network at the same time! You can set up an iGive account here: Just remember to choose the XLH Network as your chosen organization.

And, of course, if you have an idea for fundraisers in your local community, we hope you will contact us so that we can assist you in any way we can. Thank you for your continued generosity to the Network and for considering some of these quick and easy ways you might contribute to our cause!

Thursday, March 24, 2016

XLH Day t-shirts

Under the leadership of Network board member Kathy Buchanan, the Texas XLH Day committee has been hard at work to make this year's XLH Day the best one so far.

We'e planning to have shirts printed for the event, but first we need to figure out what will go on the t-shirt, and we're hoping you'll help. We know there are creative XLHers out there who will have better ideas than we have, so we're holding a contest for slogan/design ideas.

The design must include our official Network logo (the one at the top of our website), plus a brief (no more than ten words, and preferably closer to five or six) family-friendly slogan that reflects what XLH Day means to you. Optionally, you might consider what it means in the context of holding the event in Texas as opposed to other locations.

If you're a graphic artist with access to design tools, you can submit the completed design, but you don't have to be an artist to enter the contest. If you think of a great slogan, you can submit it without worrying about the details of the design layout. We'll tidy up the graphic elements of the submissions, if needed, once the winner is chosen.

Deadline for submissions is 11:59 p.m. on May 1st. Submissions must be here: (To access that link, you will need to register or activate an existing account if you have not already done so.)

The results of the contest will be announced no later than June 15. The person who submits the winning design will receive a free t-shirt and an acknowledgment in the official program for Texas XLH Day.

Now for the legal stuff: By submitting your design, you are irrevocably assigning to the XLH Network, Inc., any copyright you may have in the design. The XLH Network, Inc. reserves the sole right to choose which design will be used, and further reserves the right, in its sole discretion, to determine that no design is suitable for the planned event and not use any of the submissions.

Tuesday, March 22, 2016

Educating the doctors

One of the challenges that patients with rare conditions face is dealing with doctors who are both unfamiliar with the condition (understandable) and dismissive of any attempts by the patient to explain the condition (not so understandable).

Usually, there isn't anything we can do about it except move on to another doctor. But what if you could meet a doctor in training, someone who isn't set in his or her ways, and who's open to learning about your challenges?

You can! Global Genes has a contest for first and second year medical students that involves getting to know a rare family and writing an essay on the experience. You can read more about it here:

If you're interested in being the rare family for one of those students, you can sign up here:  There, you'll find a list of locations where they're searching for a family to match with a student. If your location isn't listed, check back, because the list is updated weekly.

Wednesday, March 16, 2016

Message from President Bill Coogan

It is an exciting time to serve as interim president of the XLH Network. Thanks to the leadership of my predecessor and the many contributions of the board of directors, the scientific advisory board, and our other generous volunteers and donors, we have numerous projects in the works.

Last year we hired administrative assistant, Stacy Duck, and we're now beginning the process of hiring an Executive Director during the second half of this year. Stacy has already completed a number of administrative projects that we'd never had time to do before, and we expect that hiring an Executive Director will enable us to expand by leaps and bounds the amount of work the volunteer officers and board can accomplish on behalf of our members.

The board and I will also be representing XLH patients and their families at numerous venues this year. We will be at the Endocrine Society conference in Boston on April 1-3, the American Society for Bone and Mineral Research conference in Atlanta on September 16-19, along with an assortment of other patient-advocacy events in the U.S., the U.K. and Europe. We're hoping to arrange a time to meet local XLHers when we're at those events, so if you're in the area and would like to say hello, please email me at

Last, but not least, we are hard at work planning XLH Day, to be held at the Shriners Hospital for Children in Houston, Texas, on August 12-13, 2016. We'll have livestreaming for those who can't attend in person, and afterwards there will be videos of the main presentations available at our new Youtube channel,

Please keep in mind that even though we have been fortunate in obtaining grants for our two new employees due to the generosity of Ultragenyx Pharmaceutical, those monies do not cover the rest of our budget, like the cost of our attendance at medical conferences or the expense of this year's XLH Day. If you'd like to make a donation, the information you'll need is here:

I look forward to updating you on our activities as the year progresses, and I thank you for your support.

Wednesday, March 9, 2016

Rare Disease Week Recap

Representatives of the XLH Network were busy in Washington, D.C. during Rare Disease Week.

President Bill Coogan and past president Becky Mock attended events at the NIH and displayed our literature there along with posters reflecting data from Ultragenyx's Burden of Illness study. You can get a taste of the proceedings by by viewing the speeches from the NIH, including comments by members of the U.S. Congress's Rare Disease Caucus and directors of government agencies dealing with medical issues.

Bill and Becky also attended events sponsored by the Rare Disease Legislative Advocates (a program of the EveryLife Foundation, a nonprofit dedicated to accelerating biotch innovation for rare disease treatments through science-driven public policy), and met with legislators to discuss the needs of the rare disease community. We'll have more later on some pending legislation of interest to members of the rare disease community.

You can see pictures from the event at our official Facebook page.

Wednesday, March 2, 2016

Meet with the President and Directors

Network President Bill Coogan, along with Treasurer Geoff Edelson and Board Member Gin Jones, will be representing the XLH community during the Endocrine Society conference at the Boston Convention and Exhibition Center on April 1 through 3, 2016.

We'd love to meet the local XLHers when we're not busy on the exhibition floor. If you'd like to have a chat with us that weekend, please contact bill.coogan at, so we can arrange a time and location.