Where have all the staffers gone? It seems like that should be the line of a song. Grin! I just wanted to post a little about what is going on behind the scenes at the Network. I know those of you who actively follow the HPS Network’s social media etc. or who have needed things from us lately, might have noticed we’ve been less active online and maybe not as quick to respond to non-emergency issues.
There are a lot of times things are quite busy in the HPS Network offices, but we can’t always elaborate about everything happening. It isn’t that it’s a huge secret exactly. It’s more the boring nuts and bolts of keeping the ship afloat and the trains running (hopefully at least mostly on time.)
There are times we are working on things that just can’t be announced yet for lots of reasons. This is just like any other business. Sometimes things fall through, or developments can’t be announced until all the players are ready. Sometimes we are just so busy working to move the cure forward, we just aren’t in a place where we can stop and tell you about it.
This past month the office was working on a large grant application. Applying for grants, at least to me, a non-professional grant writer, feels like applying for scholarships when I went to college. You apply for lots of them, and if you do well, you get a few.
The difference is grant applications are usually more involved than an essay question and a few letters of recommendation.
We don’t know if we will win this grant. It would be a game changer for us if we did, so it was worth putting some of what we normally do on hold for a few weeks to try for this grant. There are not many funding opportunities that are made for rare disease groups. Rare disease groups are not all created equal. There’s a huge difference between a disease that is rare, but affects 200,000 people in the US and one that is rare and affects maybe 1,500 people in the US. Some groups have different socio-economic challenges among their memberships that others don’t. But for this grant, at least this time, it didn’t feel like we were trying to push a square peg into a round hole. I pray that because it felt like we were such a good fit, that our odds, and thus our time investment, were worth taking a chance.
I’ll blog more about this grant opportunity when the results are in – even if we don’t get it. It’s a very exciting project and it will help all rare diseases eventually.
Now we are on to the next crisis.
We have dreamed of a new website for a while now, but we haven’t had the funds. Or, perhaps I should say, we chose to put the funds into outstanding research opportunities and thus we couldn’t afford a complete overhaul of the Website with everything we’ve dreamed of. As happens so often with the Network, we have a wonderful volunteer that is helping us at least give the Website a facelift. She’s done a lot of work and has been patiently waiting for us to get back to her so we can go live with the new look.
Much of our content needed to be updated, and we are very careful about anything we publish that is in any way medical, so it all has to be triple fact checked. We want to get at least the bones of the new look live so any donors or granters researching us can see it. So, now we are putting a few things aside to get this project finished.
This is why a few other things have fallen to the wayside a bit. I have not done a great job keeping up with our social media, for example. We’ve had a relatively reliable monthly e-newsletter going out, but in Sept, and possibly Oct it had to be put on hold.
It is frustrating because everything we do is connected and meaningful to our mission. If it weren’t, we wouldn’t do it. We don’t have time to waste! HPSland is like a woven tapestry. You can pull a few threads out from time to time, but the product is diminished. If you do it too often, all the connected parts come unraveled.
So, please be patient with us while we try to do what we need to do to keep moving toward our goal – better treatments, and someday the cure!
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