Potential

Well, this is the first good news/progress I've heard in awhile! There has been progress made over these last couple of years as far as connecting on the Hill with politicians and getting a small amount of funding towards SMA out of Congress, but this is one of the first things I've seen since the mouse model and some of the clinical drug trials that I thought sounded like real progress. Other disorders that present with the same or less frequency in the population receive sometimes twenty times the amount of funding towards a cure, even though scientists have publicly stated that SMA is the most likely disease to be cured...if they had the money. That's why we have small parent-run groups who dedicate themselves to fundraising, and they have been the impetus that has gotten the ball moving over the years. Everyone knows that the first step towards fixing a problem, any problem, is understanding exactly what the problem is and how it works. The fact that scientists just recreated SMA in human cells and can now study it and test potential drug treatments on these cells so much more accurately and effectively is a Big Thing. I hope to hear progress soon (as soon as these things move, anyway)!

This reminds me-when I talk about "working from home", it is a short cut meant to spare you all from any additional mundane trivia about my day beyond that which you already have to bear. ;) But just in case you are inexplicably curious, it consists of, depending on the day, a whole lot of internet/computer work. With my bank runs comes entering deposits (it gets very busy this time of year for SMA Support as people send in last-minute tax-deductible donations prior to the end of the year), balancing accounts and sending out acknowledgments. I may be having a conference call or email with other groups on plans for a conference in the future and my role in it. I may be going through my snail mail piles for home or SMA and dealing with the contents. I may be working on collaborative efforts in the political arena of SMA, helping set up mail-ins for Congresspersons and Senators. I may have been working on updating websites, setting them up, going through and maintaining by spam removal. I may be getting together a shipment (something I need to do now, actually). A lot of time is spent answering emailed questions such as "if I'm a carrier can I get SMA too" and "where do I go for testing" and "one child has it will my next child have it too" and "what can I do to stop this". I go through applications for services/supplies requests. I moderate a grief support group and a fairly busy chat group. I may be searching for a good place to purchase equipment, or calling in another standing order for someone on a monthly need. I may be accepting equipment from one place and finding it another home. I may be printing off checks to mail out, or looking for the best deals on certain machines. I may be looking into the latest research information or just checking on how some families are doing. Winter is very hard on these kids/families. I may be researching flying information on a particular topic, studying something I need to refresh myself on or learn. Or returning work emails or calls. Some days are busier than others of course, and Kaylee has her stuff that we do each day for school and after-school activities and just plain ole being "mom". It's very common for me to still be working on stuff when most people are in bed. And I often get behind, too. But now you know what trivia I am sparing you from on a daily basis when I write "worked from home for awhile" or "nothing exciting happened today". :)

So, what did happen today? Nothing exciting. I froze my rear-end off, ran errands, will be going to the store late in the evening to try to avoid the crush of people, ate lunch at a freezing cold restaurant with friends, played with Kaylee, did some house stuff to get ready for Christmas like bedding and laundry and picking up, and...worked from home for awhile, which I will be doing until probably pretty close to bedtime... :)