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.