Wednesday, September 24, 2014

A strategic plan

The Board of Directors met in August to do some much-needed Strategic Planning for the Network. After an intense weekend, we now have a roadmap for the next few years. The bottom line: there's an overwhelming amount of work to do, and a lot of expenses to pay for. Even though we're an all-volunteer organization at present, there are still substantial costs.

Our basic annual overhead (postage, website, state registrations and filings, one in-person board meeting, etc.) amounts to approximately $10,000 per year. We had a presence at three major conferences this year, and we'd like to attend more. At a minimum, we should be sending at least a couple people to represent the Network at the key gatherings for endocrinologists (like the ICE/ENDO conference our president Becky Mock attended in June), bone metabolism doctors and researchers (like the ASBMR conference that Becky and our treasurer Geoff Edelson recently attended), pediatricians and dentists.

No matter how much we work to minimize the expenses, conference attendance can be costly even though we do our best to get "scholarships" to waive some of the fees. In addition, we have to cover the cost of printing/shipping flyers and other booth handouts, and the custom-designed banner for the booth (a one-time cost incurred this year, to be reused as long as possible).

If you do the math, it works out that in order to attend four conferences a year, we need to have between $12,000 and $16,000 available in our budget, in addition to the $10,000 of overhead costs. That brings our annual budget, for the absolute minimum amount of work we'd like to be doing, to around $25,000.

The minimum budget doesn't include anywhere near all of the projects we'd like to be doing. This year, we made our first-ever donation – but not as much as we would have liked – to an XLH clinical research project (more on that later), and we'd like to support significantly more such research. There are also plenty more important conferences we could attend, up to one a month, but adding eight more to our schedule would require an additional $30,000 in the budget.

Another major project that we're nibbling away on, as monies become available, is increasing the opportunities for members to interact with each other more, both in person and virtually. We're also looking into ways to better recognize our global community by sharing information and support in multiple languages. These two projects alone will add significantly to our budget (in addition to hundreds of hours of unpaid work donated by board members and other volunteers).

An even more expensive project in our Strategic Plan is the ultimate goal of hiring a full-time executive director to take care of the Network's day-to-day business, freeing the board members to focus more on the strategizing and hands-on work that only someone who has direct experience with XLH can do.

Sure, those are huge, long-term goals, and we'll need to take some baby steps to get there, but with your support, we can do it.

Wednesday, September 17, 2014

A different kind of challenge

Since the Network's inception in 1996, the members have talked a lot about our medical challenges and experiences, but now we'd like to expand the conversation to get a better idea of what our lives look like. Toward that end, we're challenging you to take a picture (or three) that reflects the theme of "What XLH means to me."

Before you start focusing your camera, take a minute to reflect on the wide range of the XLH experience. It's an unfortunate fact that many XLH patients (and their caretakers) spend more than their fair share of time in medical and dental offices, but there's so much more to our lives than those experiences. An XLH child competing on the swim team, winning a ribbon at a science fair or rebuilding a car engine is every bit as much a part of the XLH life as the doctors' visits. Sure, sometimes there are tears, but other times there's laughter, or at least determination and courage, in the face of challenges. No one thing defines us all, or captures every moment of our lives. So, let's see the diversity of what XLH looks like!

We'll collect the pictures for the next six weeks or so (until November 1st), and then share the very best ones with the our global community in December.

We're particularly excited to have a talented guest judge, Laura Hensser, who will choose those very best pictures after the board of directors has narrowed down the submissions to a manageable number. Laura Hensser is a photographer and a Curatorial Project Assistant with London's Tate Modern. She has a Masters of Curation from the Chelsea School of Art in London.

If you'd like to participate in this challenge,  there are just three things to remember:

1. You  have to be a member of the Network (or the child of an adult member) to participate.

2. You can submit up to three pictures per member by sending the digital files to In the subject line of the email, please indicate either: "challenge, adult" or "challenge, minor."

3. Some pictures may be chosen for promotional use by the Network, so we'll need to have a written release from you. Along with the picture file(s), please attach a PDF file of the signed photo release (parents/guardians must sign for anyone under the age of 18). We'll have the download link soon. If you can't scan the signed release to send it back as a digital attachment, you can print the form, sign it and mail it to our headquarters: 911 Central Ave. #161, Albany, NY 12206.

If you have any questions that aren't addressed here, please post them to the listserv, so everyone can see our answers.

We can't wait to see your pictures!

Wednesday, September 10, 2014

Tips for sending your XLHer back to school

Today, our guest blogger is Jennifer West, the mother of a spontaneous XLHer, who lives and works in the Wisconsin Northwoods.

If you're a parent with young children, you're probably buried somewhere under a pile of school registration forms, early-release forms, health forms, snack forms and help-me-get-to-know-your-child-better forms (I filled that one out last night. Truth). 'Tis the season for organizing and setting new routines.

But when you have a child with XLH, those forms can take a tiny bit longer (how many times can you write X-linked hypophosphatemic rickets without your hand cramping up?). You probably have a few extra worries, and you're probably anxious at handing off an expensive bottle of Calcitriol to the school nurse. To help you, here are five things I've learned about school, my child and how to handle XLH.

1.     Talk to the right people; provide the right resources
My XLH daughter started second grade this year. Each year, I've talked to her primary teacher about XLH before or on the first day. I also provide the URL for the XLH Network website, and all of her teachers have taken the time to research her condition. I make sure to include the gym teacher, so that person is aware of any physical limitations.

2.     Organize meds. Know who's giving them. Check in often.
We've had various people administer our daughter's meds, including daycare providers, school nurses, sitters, grandparents, etc. My daughter takes a liquid form of Calcitriol, rather than a pill; the dose is small and the syringe is hard to read, so I go over the instructions very carefully. We now provide a "guide" syringe where we've marked the dosage with a piece of electrical tape, just to avoid confusion. (This helps with overnighters or play dates when you have someone new giving meds.) Also, check in occasionally with the office or school nurse to make sure they have enough of everything.

3.     Supply extra comfort care.
Provide the school with a non-prescription pain med just in case it's needed. Also, talk to your teachers about what to do if your child is in pain. Maybe the first approach is heat or rest, and if that doesn't work, go for a pain reliever. Have a plan on how to deal with associated aches and pains. You can even consider sending in a heat wrap for the teacher to keep in the classroom.

4.     Give age-appropriate answers
When our daughter first went to school, I was worried about how she would respond to inquisitive classmates. What I found out was she had her own answers to their questions. When asked why she takes medicine, she tells her friends, "To help my legs grow better." Consider crafting some simple, age-appropriate answers with your child. It's amazing how quickly kids dismiss things. They don't typically need an in-depth answer. They just need an answer. 

5.     Just breathe.

Enjoy the school year, moms and dads and caregivers. You are an amazing bunch. XLH is only a tiny part of our kids' stories. They have so many things to discover and they'll surely surprise us in so many ways this year. Just. Breathe.

Wednesday, September 3, 2014

Meet Treasurer Geoff Edelson

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

I'd been a member of the Network since 2002, and was an early financial donor to the organization. I started to think about volunteering for the Board after I attended a couple round-table discussions of XLH patients and Network officers at Yale. I'm afraid I missed the first deadline, but was elected to the Board early in 2012. After one year as an at-large Director, I was elected Vice-President for my second year on the Board, and then Treasurer that started at the beginning of this, my third year on the Board.

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

I bring the snacks to the in-person meetings! On a more substantive level, I've always been pretty good at finding common ground to create a clear path forward when discussions become heated and there is not full agreement on how to proceed. I try to pull from my considerable business and non-profit experience to contribute as best I can. I also understand what it's like to be experimented on. I've been participating in clinical trials since the age of ten, so I totally get that gig; including the excitement, apprehension, and disappointment.

3. What XLH project are you working on now that you're particularly enthusiastic about?

Something that came into particular focus for me at our recent Strategic Planning event was that in order to serve our membership properly, the Network can't continue to operate on a year-to-year shoestring budget. We need a predictable and sustainable financial base, so we can commit to projects that will benefit our members across a wide range of services, including advocacy, education, facilitating interaction with other members, arranging social events for both children and adults with XLH, and supporting medical research into our condition. The Board is looking forward to the day when, among other long-term goals, we can afford to hire an executive director to work full-time on behalf of the members, something that we, as volunteer board members, simply can't do. The only way to reach that goal is through donations from individuals, charitable foundations, and business entities, and I'm dedicated to helping the Network undertake that fundraising.