Friday, December 26, 2008

Drinking a latte at Homers

Thanks to several of you who were so thoughtful this holiday season, I’m recovering from my post-Christmas eating orgy at Homers by drinking a latte and working on some projects. (Kevin would have killed me yesterday if he’d known what I was up to – but it was Christmas!)

I’m trying very hard to make working for the HPS Network, whether I’m being paid or not, my full-time job these days. The trouble is I’m not on disability right now for nothing and sometimes I just can’t get it all in. But, when I’m really involved in a project, it’s so helpful to be able to get out of my apartment and go to my “virtual office” – Homers.

I want to work from home. I don’t see how I can ever work again otherwise right now. Between all the doctor’s visits, health problems etc. it seems like working from home is really my best option and I think I have a good temperament for it. Yet, as perfect as it sounds, there are days when the dust on the shelves in the living room, or the dirty laundry in the hamper – or right now the huge paperwork mess all over my study and dining room table – and well, to concentrate you just have to get away.

The HPS Network is not unlike the corporate job I left in that there’s so much to do and never enough resources – human or financial – to get it all done. And, just like in the running of a magazine, you start out the day with a list of things to do and then a crisis hits and the list is out the window to be put off yet another day.

Unlike my corporate job, however, I can be in the hospital at NIH, or go to the doctor when I need to, or have a bad day where I stay in bed, or take a nap halfway through the afternoon or properly attend to my “code brown” problem. It has made managing my health problems so much easier to have some schedule flexibility.

But I’m a type A personality and if I set out to accomplish a task at the first of the day it does bug me if I go to bed with it undone. I have to work at setting reasonable goals for the day.

Among the projects I’m working on now:
We’re having some Yahoo-related issues with the listserves. They aren’t affecting the people already on the list, but for some reason when I try to add someone we’re having issues.

I know everyone must wonder why they never get a newsletter. Well, the HPS novel, book, whatever, is so close to being finished. We’re wrapping up some translation issues and ran into some technical challenges in the process. Now the printer isn’t accepting new jobs until after the first of the year, and I really won’t be able to deal with him until after I get back from NIH. I promise – this problem will improve now that I’m not doing it in addition to working.

I’m hoping to sell some “sponsorships” for the conference to generate some revenue to help us pay for things this year. I’ve identified a list of potential companies and worked out some of the details. Now I need to get with Lisa for designing some promotional materials and get busy on starting to sell these things – that should have started in Nov. If anyone is a sales person and would like to help sell, I hate selling and would love to delegate that part of the job! I also need to check with an attorney about a contract etc. If anyone has any ideas about potential sponsors, I’m open to them, although the Network’s policy is not to accept funding from drug companies. Just FYI to the creative thinkers out there!

The HPS Network will soon be launching our new Web site. A big hats off to Matt who has worked very hard on this project. We’re getting close! I’m very excited about some of the new features we’ll be introducing over the next year. We’re planning a “soft launch” instead of a big grand tada moment. We had been trying to hire this job done, but for a variety of reasons that just wasn’t working well. I think we need to get out of the mentality of doing a tada moment – the Web site should never again be a static thing. It should always be in a state of update and improvement.

Grants – we need grants! I’ve identified 12 foundations that offer grants we might actually qualify for – and Matt’s girlfriend found two more. If I’m ever going to be able to make working for the Network as a job a reality, I’ve got to come up with a way to fund myself. I couldn’t sleep at night doing it as a “job” unless I can find a way to make the Network more than I cost the Network through some combination of fundraising, grant writing or money savings. I’m going to ask Voc Rehab. to make non-profit management from home my vocational goal and am hoping they will help fund some educational opportunities to teach me how to do this better, or to beef up my resume to be more attractive to funders.

Conference – it’s time to get in the heat of planning conference. After the New Year conference planning will be in full swing! No one has any idea how much time that takes – trust me.

Standard of Care project – This is a vital project that hasn’t gotten all the attention it needs because we’ve had to address more pressing issues to keep the Network afloat. However, we hope to publish, in cooperation with our scientific advisory board, a much more extensive and complete standard of care for HPS.

And then there’s the running of the listservs, answering questions from perspective new members, ongoing outreach projects and attending to situations that come up among our members.

My mom keeps worrying if I’m bored now that I’m not working. HA! Trust me – I’m not!

No comments: