SoftServe Matters! (a registered non profit!)

I got the package yesterday…. a box containing a gold lettered book that is the official documentation of SoftServe Matters – gray matter, white matter, your funding matters! It’s non-profit entity that will fund the production of MS SoftServe and the subsequent chronic disease customized learning sites that will be developed. It was the most exciting package I’ve ever opened. The potential for what can be accomplished with this site has increased dramatically. Now I will pursue grants, tax deductible donations and fund-raising events to make this site a reality.

As with anything… I encourage the For Us, By Us model…so if anyone has any suggestions for fund-raising or sponsors…email me at amy@mssoftserve.com

As a community we are greater than the sum of our symptoms, so lets put our gray matter together and make this happen– for all of us to live a productive life of learning.

Sometimes

It seems like life is moving in slow motion.

Not because the activity has died down. In fact the opposite is true.

Or because I can’t move as quickly as some. There are moments in a given day, during a given commute, when I might even be called rapid.

This motion refers to something else that is happening underneath the activity in a day. In my day.

It’s the timecode. It’s the white noise. It’s the silent optical soundtrack.

It’s all the the things that I wish I could be working on,

the significant, meaningful things – that are cast aside – for the day-to-day diurnal noise.

 

 

I feel much better thank you.

MS SoftServe Progressive (in a good way)

Slow but steady. The text for the “staging ground” is being posted. Its the “Don’t Worry Be Crappy” theory in full force. More editing is needed… but it will do for now.

So that text will be up in a day or so. But a bunch of text describing what will be isn’t much. Words get boring and don’t hold the attention span for long on this multi-media ride that is the Internet. So where is the video?? Its in the proverbial can…just needs a little bit of editing. It’s unfortunate that I didn’t have Final Cut Pro handy when I was recuperating from my Pancake House burns. That would have been a very productive week. No, I spent my days dressing wounds and writing angry letters to the Better Business Bureau.

I was hoping to find an NYU student who would be willing to do the editing for a little extra cash. (little is the operative word) Unfortunately they are too busy with coursework. Damn those priorities!

On another note: SoftServe Matters, the nonprofit that LegalZoom is processing is proving to be a much slower process. I check its status every other day. It makes me anxious because I know that once it is official there will be grants to apply for and proposals to write.

It’s very much hurry up and wait ride. Wanna go for a spin?

MS SoftServe and other distractions.

The progress of MS SoftServe is slow and steady.

As I work towards the immediate goal of editing the interview footage that will support an explanation of the site, I am seeking the balance. It’s a balance many struggle with. Full time employment (administrative staff at NYU-Tisch Film and TV), home life with my husband ( a photography professor and artist) my 6.55 year old daughter in first grade; a welcome distraction with homework, games, violin, conversation, reading and must see movies. (Horton Hears a Who ) Oh yeah, and a certain amount of maintenance :). And of course Multiple Sclerosis, something most of the people reading here can relate to, throwing in a new challenge on a daily basis.

Yet secretly, behind the scenes I’m editing and writing and planning. Sometimes it’s not in a tangible way; sometimes its progress that is only evident on a neuron-ic level. Keeping company with my myelin, or in some cases a lack there of :), it is progress that I can be excited about.

On a more obvious level I am working to start my consulting business SoftServe Central- Educational Concepts in Online Learning. Using my expertise in instructional design combined with almost 20 years of MS (come June 2008) I consult on how to design ideal education for those of us with this label, this lot in life. How to speak to us, the patients in a way that recognizes what our experience is and that we are unique individuals in spite of a common diagnosis. To explain how to connect with each of us with our individual version of this disease without alienating any one of us.

I’m also in the final stages of developing a non-profit organization called SoftServe Matters (grey matter, white matter, your funding matters!) whose mission is to create educational websites for individuals who need to learn about any disease in a customizable, reduced anxiety way.

Then there is my blog and the greater world of MS bloggers. I would love to sit all day and read and write. I want to tell the bloggers I’ve read (and continue to read) how significant what they are saying to is to the MS world and the greater world of people who also happen to be patients. I want to connect to more people, who like me and many who I have met, struggle to learn about their constantly evolving unique version of MS at a safe place that to be confident we aren’t going to learn about things that aren’t relevant to us; facts that will cause anxiety about our uncertain future. (I want to edit that last run on!)

I want to work on MS SoftServe, a solution that is waiting patiently for funding

I have to keep this hope and desire quiet while the rest of my life happens. I need to find balance. Don’t we all.

MS SoftServe -More Progress

I think this coming week we will be a productive one for MS SoftServe. We’ll be editing the video that will explain the staging ground. We shot it intermittently between work… trying to pop in and grab a shot whenever we could. That resulted many variations on light….and shots that look just slightly different. I’m hoping we will be able to compensate for this variation by making it compelling in content if not style.

It was my desire to make the development of the site follow a similar approach as the SoftServe technique itself. For example. You will have the option to download a pdf of the information, listen to the content being spoken, as well as watch a video of someone (in this case me!) explain the concept that is being developed. It would seem egregious to make a developmental site that doesn’t follow the theories of instructional design that the site being developed is all about!

We will also start the design of the map of progress. This area is very exciting to me. It will explain what it is we are planning on developing for MS SoftServe. We are going to continue to develop the site as long as the ideas and needs continue to flow. I will look forward to the feedback and suggestions that people from the MS Community world-wide have to offer. It is an organic process…. growing and changing as the needs of this population evolves.

Another exciting element (are you getting that excitement is the lait motif here!?) is that SoftServe Matters, the proposed non-profit established to create MS SoftServe and SoftServe web-learning for other chronic illnesses is likely to be through the process of filing with the state. With that we will commence with our fundraising effort, full-swing.

Thanks for reading…and if you are following the progress and have any questions or comments… please respond to this blog, until the site is up and running.

In the meantime. Thanks for reading.

MS SoftServe- Getting There

Today was a good day of shooting. I have a set up in an adjacent office and Bonita (my webmaster/director/vegetarian cook adviser extraordinare) assisted as we embarked on our third day. It’s easy for me to get honestly enthusiastic about the website in spite of the fact that I have been discussing it for 3 years. I guess the hard part is getting me to stop talking… and focus has always eluded me. 🙂 What I set out to do is explain what MS Softserve is, why we need it, and ultimately what this “staging ground” concept is.

From the very beginning I have surrounded myself with great advisors. I think that is truly a skill I have mastered in my late thirties. Being married to and artist, photographer, instructional designer is very helpful. Keith’s creative thinking and strong resources have proved very helpful in this process. One such connection is to Doreen Stiskal, a PT Phd who is also an expert in Instructional Design. As I was completing my thesis, Doreen and a number of other individuals from Seton Hall (where Keith worked at the time) offered a critique and practice presentation which turned out to be particularly informative. Much of her early observations shaped my presentation. So as I set out to produce MS Softserve I sought her counsel yet again.

She had some terrific advice. As we discussed all of the areas that I am working towards expanding… she quoted Guy Kawasaki “Don’t worry, be crappy.” (“Revolutionary means you ship and then test… Lots of things made the first Mac in 1984 a piece of crap – but it was a revolutionary piece of crap.“) That really spoke to me. I could work forever on what this needs to be before I launch it. At that rate it will never get launched.

Get something up there. And start filling in the blanks as it is developed. She sited Brad Pitt’s effort to rebuild New Orleans one room at a time. You can sponsor a bathtub if that is the level you want to contribute.

Recently Madeline was invited to a birthday party where in lieu of a gift, it was suggested to donate to heifer.org What a great way to explain charitable causes to a little person. On the site you can contribute real things to real people. She decided to donate her money to bring a box of chicks to a family in Africa who can use them for to start a business.

So, with that in mind… you can go to MS SoftServe and choose one particular area of study to have developed. Perhaps your are a big fan of the Central Nervous System and you want to see that prioritized. You can make a contribution to complete that entire section. If you would rather contribute a lesser sum, you can sponsor just an animation in that section. The map of progress will be the key to see what areas have been completed and what is to come.

This site will thrive as people with MS help to shape it. Participation can occur on many levels. Whether it be the content of the site or the methods of learning, you can put your mark on what this site becomes. By doing so, you will help the site to serve a wider audience.

more later…