What is that word(s)?

Don’t you hate it when you have something to say, it’s right on the tips of your fingers, yet it remains elusive? Elusive is such a great word,  don’t ya think? But it isn’t the one I’m looking for!

Please check out my post on MS Health Central that goes in to stunning detail about all of the words I can’t find and as a result tells you all about MS SoftServe. 😉

MS SoftServe Update

This week I began the first fundraising outreach for SoftServe Matters, Inc. (SSM) Its mission is to provide meaning for learning about chronic illness on the Internet. If you are reading this without knowledge of MS SoftServe, or SoftServe Matters this video should fill in the blanks. And you can read the work-in-progress entries in the category column on the right- MS SoftServe, etc.

So after setting up the accounts for the nonprofit, and paypal.com and justgive.org and my Web-Master-Bonita made the appropriate adjustments to the site in progress- We are now an active fundraising non-profit.   Lots of hard work went in to making that happen… but a tiny portion of what lies ahead.  Right now, in fact, I should be writing the “business strategy” and budget, so I can start applying for grants. If anyone out there has any suggestions, or fundraising ideas- speak! 🙂

I’ll report back soon!

Thanks for reading.

SoftServe Matters, the non-profit engine behind MS SoftServe.

Two weeks ago I participated in a NonProfit Boot Camp put together by Craigslist Foundation. You know, the people that have given us access to information (fab sales!) in our community. In addition to getting a lovely dining room table, I can thank them for providing a new level of motivation in getting SoftServe Matters up and running. The timing for this was perfect as I just received a call from the IRS that my application for 501c3 (tax exempt) status is nearing completion.

So, let me take a moment to talk about MS SoftServe, its origins and SoftServe Matters the non profit that is dedicated to providing meaningful learning about chronic illness on the Internet.

While getting my Master’s in instructional design in 2006, I realized that the problem I have with learning about my MS is universal, and can not only be resolved, but it can also become an empowering tool for all patients with chronic illnesses using the technology of today.

I, like so many at diagnosis, struggled with learning about MS. The anxiety of not knowing what I would be coping with the next day, month, week or year made it impossible to learn more about this disease. Everywhere I looked I feared,  Will that be me? In 1988 the Internet as we know it was not yet available.  Any effort I made to learn more from the resources that were available back then resulted in paralysis by fear.  As a college junior I struggled to come terms with this unknown in between my studies and filmmaking assignments. Twenty years later my struggle continues as a variation on that theme.

While I was afraid to learn about the diagnosis in 1988, the twenty years of living with MS forced me to revisit that emotion over and over again and I continue to do so to this day.  As I learn to cope with the changes in my disease, scenarios that may include a future with the symptom de jour play themselves out in slideshow form.  I want to be my own best advocate, to learn all there is to know about managing life -not only on a symptom level, but also the disease itself – and all of the scientific advances in treating MS. I want to learn about how to choose medications for the varying symptoms, and cope with their side effects. I want to be the master of the unique disease I have, so I can teach to world around me what I’m experiencing and why its happening. But I continue 20 years after this diagnosis to tread with fear when I need to learn.

The Internet affords us so much access to information, its difficult to remember a time when we didn’t have the answers to things. And while it is a wondrous resource for facts and information (No more social bets of who was that actor? and I think I saw him in the last Woody Allen film …  leading to furious page flipping!) trying to learn about anything that has emotional implications is practically impossible.

Multiple Sclerosis is completely unique for every person. That fact is at times frustrating and at  times reassuring. Yet because there is absolutely no way to predict what is going to happen to you,  (or me, in this case) I am left vulnerable to those possibilities. And that is exactly what is force fed to you when you sign-on to learn something. Every possible consideration is thrust at you, challenging my ability to cope with what I already have on my plate; and making my fears and nightmares more specific.

So, from this ongoing need along side my recent education in instructional design I created an approach that would be the key to harnessing this vast amount of information.  It would allow for every person with MS to log in and establish her/his preferences of the what and how s/he wants to learn about her/his disease. The learners are in complete control from start to finish. Creating a safe space for learning about their version of MS. Through scaffolding, as opposed to lists the user will deliberately choose the specifics of the lesson. And once there, s/he will be able to establish and save how s/he prefers to learn.

I know from my experience that I am a visual learner. If I can see a short animation describing a concept it is much more likely to stick with me. That isn’t the case for everyone though, some people prefer to read it, or download and print it. Maybe s/he want to watch and listen to a medical professional describe the concept, or a peer with MS. This site will provide multiple options of how to get the information you are looking for. It will also provide an opportunity to chose the language level that you prefer.  (Simple, Everyday Scientific) And the site will go beyond a customized MS education. It will be a space where people can interactively learn how to talk about their version and teach people about that unique experience. There will be a place that demystifies the News about MS, and a space entitled Understanding and Communicating with your Doctor. The site will be filled with powerful tools for managing a life education about MS, such as creating an online space that is individualized– a URL for friends and family to sign on to to learn about your exact version of MS. (Forgive me for what was a pronoun nightmare in that last paragraph!)

For a person with MS it will be a safe, reliable place for information and education…one that is customized to meet her/his individualized needs through customization.

SoftServe Matters is the non-profit organization that will fund this and other sites for a variety of chronic illnesses.

Because coping with a chronic illness is a life of learning. And why shouldn’t we have a place that knows us and works to accommodate our needs;  to empower each of us to be our own wise advocate and the educator of all who we come in contact with in life.

It’s a level of control we all deserve when a lack of control is what we are all too familiar with.

I encourage you to share your thoughts here; and thanks for reading!


MS SoftServe Update July 2008

I suppose it is better to date these ‘checkins’… because listing them in numeric order can be hard to keep track of.

As some of you have been following, I’m dedicating every free moment outside of my job, parenting and blogging to the production of MS SoftServe. Incase you aren’t one who is in the know, MS SoftServe is a website dedicated to customizable learning for people with Multiple Sclerosis. A place for the person who has MS to control the information they are getting and how they prefer to learn. This is an empowering method that prevents anxiety as the person determines that what and how of the process. (Check out this video for a more succinct explanation.) So the ongoing question is… What’s going on with the SoftServe thing??

If you’ve been checking back regularly, you have noticed that the development of MS SoftServe has paused. So let me take a moment to tell you that behind the scenes a lot is happening. Although it seems like a fast paced game of hurry up and wait… what it really entails is getting the message to as many people as possible who recognize the need. Although I have assembled a great deal of information to do that virtually, it seems that their is no replacement for the impassioned pitch. And that’s what I have been up to. So, I’m off and running, with one pitch leading to the next. And they told two friends and so on, and so on.

I’ll let you know when I find a break through… or you will when site development pics up again.

Thanks for reading!

MS SoftServe Timeline 2

Bonita is finishing up the talking head film of me describing the need for MSSS and what the staging ground is all about. She’s tested and tweaked it in all the browsers and it should be up and running within a week. (she types with optimism)

I’m starting to work on the content information to provide to Pixel Corps so that they can start working on the flash animations for the different areas of the site. They will additionally work on some 3D graphics to spruce up the word heavy areas and tweak the films so they aren’t so choppy. Maybe we can do something like the story of stuff. Anyway… thanks to the brilliant guild style organization of PixelCorps- its a beautiful symbiotic relationship.

MS SoftServe- status

The web development is moving along. The video describing the need for MS SoftServe is edited and we are fine-tuning it. I’m hoping that my passion for this website will be evident in the video. I am by no means a professional spokes person, but my hope is that by sincerely conveying the real need for this customizable learning resource for everyone with MS (or any other chronic illness for that matter!) will be recognized. We will post it and plan for the rest of the staging ground to come together in a reasonable time-frame. (The eternal optimist I am!)

Our next order of business to create survey so that we can learn first hand what people with MS need/want to learn about. Feedback is gold when it comes to our mission. In more ways than one. With your input we will not only establish what this community needs- so that the site can be built to satisfy this need- but we will also be able to show the sponsors how important it is that we have a customizable site to learn from.