A Masterpiece of Instructional Design
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John Ruskin has been credited with saying, "When love and skill come together you can expect a masterpiece." I've found this quote to be especially apropos when applied to what I describe as my dream Internet site for MS education and learning, MSsoftserve.org
Its founder has succeeded in intertwining her love and skill and passion and what has emerged is a template of excellence. A premiere on-line site for people living with MS.
MSSS is a site for people with MS, designed by a person with MS, Amy Gurowitz.
If properly funded, MSsoftserve will allow us to customize how we learn about our unique, individual type of MS, so that we can understand and treat it more effectively.
Following MS Softserve
- MS SoftServe MS~LOL: Multiple Sclerosis a Life Of Learning
Amy's blog, MS:Life of Learning, includes a category about MS Softserve, which explains the site and its origins as well as what has been accomplished so far. This link will take you to one of the main blog entries about MSSS.
Imagine
Whether newly diagnosed or not, people with MS are constantly educating themselves about disease management and effective treatments. Many turn to the Internet in hopes of receiving the best up-to-date information.
While the Internet is indeed helpful, it is also true that it is a source of consternation and aggravation. Often a search leaves one scared and running for the exit because too much info has been given all at once.
For example, I recently performed what I thought would be a harmless and simple search for information about Vitamin D deficiency. What started out as a fact finding inquiry online, soon turned into a fruitless and alarming array of danger warnings, scams and marketing ploys. Instead of receiving simple advice, I received everything but that. It was frustrating and left me regreting trying to find out more about my medical problem.
Imagine however, if I could have clicked on a site like MS Softserve. A site which would have provided me with choices as to the way I wanted to receive the information I was looking for.
MS Softserve lets the user decide if they want the info flat out with no holds barred, or if they would like the info in language that is less scientific or medical.
I learn much faster when I can view a video or animation, at MSsoftserve, I would have that choice.
Furthermore, each user gets to decide what information we are exposed to and when.
I would have loved that for my search on Vitamin D. I just wanted the basics, I didn't want to hear about horror stories of Vitamin D use, since it is a supplement I must begin taking.
If you had the opportunity to understand your MS in a way that was made to order for your specific MS needs, would you want access to the site? Of course you would!
Imagining is really no longer necessary because such a site does exist, You can visit the staging grounds of the site and watch a video presentation, which is how I first learned about the site. I am sure you will be just as impressed and hopeful as I was, when I first viewed Amy's presentation.
The Grant Maze
I enthusiastically signed up for MS Softserve with no awareness of how expensive it is to move a site from its staging ground, to an up and fully fuctioning endeavor.
I also was totally ignorant of how much funding is needed for such a comprehensive, complex site. I was soon educated about the costs involved and the desire to seek out grant funding.
Grant funding, a terrific concept in theory, but in practice not easily attained.
Here's my understanding of the process:
The quickest way to get funding for a non profit site, is to apply for a grant. The quickest and most effective way to get a grant is to use a grant writer. The quickest way to get an experienced grant writer, is to hire one, which brings us right back to funds. Having the funds to hire the grant writer, to appeal to grant holders, to give the money, to fund the site . . . Where does it end?
You can have the best plan in the world and your site can be one that would be enthusiastically accepted by the MS community, yet we cannot access this made-to-order masterpiece of instructional design because of insufficient funding.
Has MS Softserve Hit a Brick Wall?
I don't believe so. Amy Gurowitz has already been awarded an educational start up grant by the National Multiple Sclerosis Society. People are still signing up and supporting the site with donations, monetary and otherwise. The founder is searching for grant writers who have a soft spot for non profits and is hoping to find someone to help her in attaining grant funding in the near future.
Until then she keeps planning and shaping the site to keep it evolving into an ever better template of excellence.
Amy loves the MS community, her mission is clear, her ability to educate unquestioned, as is evident by her Masters degree from from NY University.
Love and skill and passion have truly come together and the masterpiece created is MS Softserve!
The MS Learning Curve
Speaking from personal experience, I appreciate any reliable short-cuts I can find as I travel the maze of new information I must keep up with in order to properly manage my disease.
I know I am not alone. There are hundreds of thousands of people with MS doing the same thing, everyday.
We all would appreciate access to the information we need, in the way we learn best. This is what educational design is all about. Being taught in the most effective way possible, on a personal level.
MS Softserve is dedicated to making this learning process as easy as possible. I hope it succeeds because we all need a site like this.
- If you are a person with MS, please check out this site carefully and decide if you would like to join and support Amy Gurowitz in attaining her goal for people with MS.
- If you are a coveted grant writer and you have a soft spot for Softserve, please contact Amy, she would love to talk to you.
- If you know someone with MS, and you think they would benefit from this type of site, please support Amy and pass the word of this site's existence.
I am hoping to update this article with the good news that a grant writer has been found. When I receive word, I will happily write about it.
Meanwhile, please feel free to leave supportive and encouraging words of support for MS Softserve and its founder. Words spoken at the right time can be oh so sweet to someone undertaking such a massive learning project.
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A Shout-out of Support
Thank you Paradise7!
As you can see, I am a big fan of Amy G. and happy to call her my friend.
I can see why you are so impressed, Jen, not only with the site, but with Amy Gurowitz. A lot of hard work has gone into all of this. Good luck, Amy, and I know you will keep it up. As for you, Jen, your review on Amy's site is as phenomenal as always. As soon as I am up to par, I will take a more in depth look into all of this. I am very impressed.
Hey there Connie Smith, what a pleasant and welcomed surprise to read your comment! Thank you for writing it especially since you are still recuperating. Take your time Missy and get better. I'm glad you are home and hope you begin feeling like your old self soon.
Your Pal,
Dar
Thanks Connie~ Looks like after 2 years of networking I may be on the brink of something really good ... that could just get the production started. Your words of encouragement are very helpful~
All the best to you, and thanks again.
Ag
I will for certain pass on this Hub. What a wonderful thing Amy has done. And Kudos for writing such an excellent review!
Going to Stumble, Digg, Tweet and share in Facebook.
Love it!
Having technical difficulties on this end, can't seem to post my comment. Trying one more time . . .
Duchess, thank you for your kind words. As regards Amy, she certainly is a "wonderful" person. What a perfect word to describe her!
Thank you also for willingly spreading the word about her efforts. You are a PEACH!
Dar
thanks once again for this thoughful hub, very informative. Love it, must stumble it.
I appreciate that Rebecca, thank you very much!
A New Way of Learning About Your MS
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Paradise7 says:
2 months ago
A very good and public-spirited hub.My hat's off to you for your kindness, thoroughness and spirit.