Wednesday, January 27, 2016

Job hunting with a visible disability

Today's guest post is by Network member, Andrew Shortall. He was diagnosed with XLH at age two, and has become a self-taught chef, wine business person and a writer, with aspirations to become a novelist. 

The New Year often brings new resolutions, new habits and lifestyle changes. For some of us, that also brings a new job, or the desire to change jobs. But what happens if you’re disabled, or have a “visible physical difference” such as XLH symptoms and short stature? How do you challenge the first impressions formed by the interviewers?

Recent studies have suggested that people with disabilities are more likely to encounter employment discrimination. Experienced candidates with disabilities face 34% less employer interest, possibly due to increased investment risk, according to a report authored by researchers at Rutgers University and Syracuse University.

It’s a sad statistic and a damning condemnation of modern life, but don’t let it discourage you! We can take steps to get past these issues. How do we make ourselves more attractive to potential employers? In my own experience, it isn’t easy but can be done. I’ve always applied for jobs I felt capable of doing. And when called for interview, I portrayed myself as the best candidate, as everyone does.

Naturally, I came up against the first impression issues. But sometimes you do meet a prospective employer who sees your potential first. The last job I worked at was one such example. In the first interview, they quizzed me about my education and work experience and only at the end did they ask about my physical condition.

I did what all of us need to do in these situations. I was honest about my illness and limitations. Since it was an office-based job, I knew my physicality would not be an issue in my job performance. I told them, truthfully, that I didn’t need medical monitoring (at the time) and I wouldn’t need to take time off. During the second interview, they asked some more questions and then brought me on a tour of the building, including the warehouse and the upstairs office where I would be based. Once they were satisfied that I could easily walk to the warehouse and use the stairs to my future office, I was introduced to the staff and told I’d have the decision later that day. Within two hours, I got the call telling me I was to start the following Monday!

Finally, some thoughts and tips if you’re job hunting:

·        Be honest, if asked, about your condition
·        Be realistic about your physical limitations
·        Be sure you can do the jobs you’re applying for
·        Be certain you understand the extent of your condition
·        Know the company and the job requirements
·        Don’t be offended if they offer to make workplace allowances for you!

Good luck in your job search!

Wednesday, January 20, 2016


We are excited to share the XLH Network’s 2015 fundraising report with our members! During the 2015 calendar year we met or exceeded all of our fundraising goals, and we have each of you to thank for our success.

This year included our first Give Rare campaign, our annual end-of-year fundraising, as well as our second #GivingTuesday campaign. The Give Rare campaign was a first for us, and it was so much fun to think about how to raise money and awareness alongside other nonprofits devoted to rare diseases.

We also had two grants funded this year—one to assist with the 2015 XLH Days and one to assist with hiring an administrative assistant. And, to date, we’ve written two additional grants and have plans to write at least one more.

In addition, thanks to our members, our end of year giving increased by 46% in funds and almost 25% in the number of donors who participated. Thanks to your generosity, we have an approved budget and we are making plans for an exciting 2016!

Wednesday, January 13, 2016

Ultragenyx Patient Day

Last year, several of our members went to Ultragenyx Pharmaceutical's Patient Day, designed to honor patients (children and adults) with rare diseases, including XLH. If you'd like to go this year, it will be held on May 21, 2016 in Novato, California.

Please note that this event is NOT the same as XLH Day. This one is hosted by Ultragenyx, not the XLH Network, but we expect that there will be several XLH patients there, and so will the Network's new president Bill Coogan,.

The event is free and travel scholarships may be available, although registration hasn't begun yet. We'll let you know when we hear that registration and the scholarship application process have opened.

Wednesday, January 6, 2016

Meet Director Rachael Jones

The Network is pleased to announce that a new director has joined the board: Rachael Jones (no relation to Gin). Some of you may have met her at an XLH Day event, since she's been a huge help, particularly with respect to the children's activities at the last two XLH Days.

For those who haven't met her yet (or who want to know more), here's a bit about Rachael, in her own words:

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

I first found out about the XLH Network a month after I gave birth to our second child. I was searching on the internet for any information that would help guide us in the medical decisions we needed to make for our children, both of whom have XLH. In my research online, I was amazed to find the XLH Network, because growing up I was told that there was no information about XLH. I happened to find the Network a few weeks before the XLH Day in Connecticut, so my husband and I decided to attend last minute. I was amazed at the wealth of information that I received in one day! I wanted to get involved in any way I could, so I first served on committees, helped with a couple XLH Days, and applied for the Board so that I could continue to serve this wonderful organization.

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

I have experience fundraising and working for a non-profit. I am also an educator and administrator and bring the ability to create programs for children.

3. What XLH Network project are you particularly looking forward to working on? 

Since my first encounter with the Network was the XLH Day, that is what I continue to look forward to helping with. I also would like to help with any projects related to pregnancy and XLH. I discovered that there is very little information for pregnant women with XLH, related to the care that is necessary during pregnancy. I am done having my children, but I want to help other women with XLH have more information that they can share with their doctors, so that they can be better informed and receive the best care possible during their pregnancy.