Tag Archives: mssoftserve

26 (46) and a week!

This has been an intriguing first week of my 47th year. Though I grow wiser every year- (no shocker, don’t we all?)¬†this past week has more to do with my life mission- a.k.a. MSSoftServe, a.k.a. Softserve Matters (just the official 501c3 name) a.k.a. tax deductible donations. ūüėČ

Much of the work has been behind the scenes during these past few years Рone foot has steadily been placed in front of the other (an accomplishment for pwms!)  and we are moving along.  (I may be using too many parentheses! Parenthesis are the new commas after all.)

CTTCA (cut to the chase amy!)

There have been three postings about MSSoftServe this past week.

It’s fun reading what others have written about MSSoftServe. I’ve been saying these¬†words for such a long time,¬†it’s hard to find new fresh exciting ways to refer to it. Thanks Jeri and Christie for taking the time to inspire with your perspective. (MTF- I just invented the acronym for “more to follow” with this explanation so you don’t feel out-of-the-know!)

So please take a moment to read. The more people read these posts, ¬†the more posts there will be. And the more posts¬†that there are,¬†the more awareness will be spread. And the more awareness spread, the more¬†grants we will win. Which of course leads¬†directly to the site’s production and an audible¬†sigh of relief emanating through the land when¬†finally we (pwms) will get this site¬†that will make dealing with MS a little easier! ūüėČ

Pfew. That was a mouthful. (Or is it a fingerful at the keyboard?) ¬†Perhaps its both! (I can’t decide)

Thanks for reading and clicking and reading.

amy g.

 

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C’mon, Jump In. The Water is Fine.

I’ve never been fond of water. I was one of those kids that didn’t like to get my face wet and all the swimming lessons I took- and weeks at camp and endless trips to the NJ lakes- didn’t help. I mean- I can swim with no problem. I was never as good as my sister who everyone said was a fish or my BFF¬†at the time (Debbie Watson!) who was on the swim team and could do every stroke invented. So, jumping in has generally happened after a hearty push. (A little help here!)

I’ve also found that when I make announcements that I will try to do something from now on- in an effort to trap myself in to a ritual- it doesn’t take. So I won’t say that from now on, I will post casual updates on how MSSoftServe is progressing. Ones that need not be cleverly worded, and smoothly edited. I won’t talk about triple checking for grammatical faux pas. Heck, I won’t even look up words in the thesaurus for snappy synonyms. I won’t even throw out links to funny references that are irreverent. I may even cut to the chase. ūüėČ

I’ve been working on MSSoftServe to get it ready for a¬†Medstartr¬†campaign. (the kickstartr of the healthcare revolution) We (the board and yours truly) have¬†the word¬†spreading site with “everything you want to know about¬†MSSoftServe¬†but didn’t know where to fund”¬†up and running. Bonita Rutigliano, the¬†director¬†who has made our web prowess possible, will help this weekend to make the sites flow a bit easier. (thank you in advance Bonita!) Margaret Gurowitz has been developing our PR plan that will include a stakeholder &¬†message map, (let’s throw in some¬†leverage¬†so i can sound even more corporate!) as well as a sizzle reel. I have learned so much in the past few weeks. Like that the woman married to your brother for 26 years has incredible talent in PR. ūüėČ And Calli Higgins has provided her expert advice (and I’ve yet to thank her personally!)¬†as we move through this process. A shout out to all the directors- for their time, dedication and commitment.

Show it! Don’t Tell it!
One of the most important part of our forward movement¬†is that we need to produce “tutorial” that show¬†how¬†this site is different from all other¬†websites. (emphatically stated by directors Roz Kalb, Steve Abrams) When I graduated with my Masters in 2006 (see pic below) I created a DVD¬†to give everyone I met insight into MSSoftserve: A¬†Life Mission. It included a very serious¬†video¬†of my talking the talk,¬†a narrated¬†powerpoint presentation most importantly a video tutorial type thing that walks everyone through a small segment of the site (as it looked then) to really give them a look at how valuable it¬†will be. Revolutionary even. (Don’t do it. Don’t go to the thesaurus.. You¬†promised Amy!)

So the “show it” piece is very important. We need to¬†lead¬†with it. Unfortunately we don’t have the funds to have it produced and it will take some time for me to produce it on my own. So, I’m looking for opinions. Do I set up the medstartr campaign with a video that only tells? When you look at the¬†videos¬†I’ve already produced, how well do they convey what MSSoftServe will do that has never been done before? Do you think any of them would be appropriate for medstartr? Should I record another that is a more compelling “tell” until I get the “show” produced?

Inquiring minds want to know!¬†So please share and reinforce that i’m not typing¬†to myself!

I will see you next week. (I really will. I feel like this time I won’t need a¬†push in. I’ll¬†lean in¬†on my own. ūüėČ

~ag

Image

So serious Right?! How is it that 2006 seems like yesterday but looks so young on me.

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We‚Äôre Almost There. For Real!

Yay MSSoftServe! Yay you! 

Ok, we’ve been at this for a long time. MSSoftServe started as a vision, became a more substantial concept, and is now it is so close to becoming a reality. I’m sure you are all exhausted. I am too. This has been a very long road! But we are SO CLOSE! In fact, we’re only $90,000 away from actually building this thing!

So I ask you to stay the course, stick with me, and let’s cross the finish line together. (Hmm. This is starting to sound like a presidential campaign!)

Thanks to the foundations, corporate sponsors, and many of you who have donated to MSSoftServe, we‚Äôve created the launching pad, or a diving board, or gateway that is alive and well at mssoftserve.org. Whatever your preferred ‚Äújumping off‚ÄĚ metaphor is, this site is how we describe the online resource that will help us to: raise the funds, to produce the site, to create the tool, to empower people, to cope with the disease! ūüėČ

(If for some reason you haven‚Äôt heard about MSSoftServe check out the video‚Ķ I‚Äôll wait for you. ūüôā )

The current site was designed by Clocktower Media of Seattle at a very discounted rate (thank you very much!) and will be the ticket to get MSSoftServe funded and produced (also at a discounted rate with Clocktower Media.)

How? I’m glad you asked.

This site, in its current form, is a one-stop-shop for everything you want to know about MSSoftServe and its production. It’s got videos, its got testimonials it’s got all the information that enquiring minds want to know. So whether you’re a person affected by MS, someone who represents a small foundation, a large foundation, a corporation- which ever category best represents you; this is the place to go to learn more about MSSoftServe and how you can make a difference for over 2.5* million peeps who are trying to deal with this very confusing disease. Now, how many opportunities in life afford that kind of impact?

And if you do fit into any of the aforementioned categories, chances are that you know that everyone who is living with Multiple Sclerosis has his or her own unique version. So here’s my question: Why should we all be expected to learn about the disease in the same way? I mean, how is that cookie cutter approach supposed to work?

(Spoiler alert)

It doesn’t!

One reason is that most people affected by MS, don’t want to know about every possible symptom, every scenario, every unpredictable outcome that may (or may not) affect her or him. And the people who care about them, who are also trying to understand how this confusing disease will affect their friends and family, will likely get freaked-out from the vast amount of info online. And with everyone on edge it’s hard to find support, everything gets worse from there and the downward spiral begins. PWMS need a support network. They need the people in their lives to understand what they are going through. If their friends and family don’t understand what they are dealing with, they can’t possibly help them manage the disease.

 

And let me say, MSSoftServe will be all that and more. It will only take $90,000 to produce the final www.mssoftserve.org site. (The complete operating budget is on the site. Total transparency. For real!)  A pretty small price tag for something that makes the lives people dealing with MS a bit easier, dontcha think?

So go! Go to the site that explains how we will do all of this. And spread the word, donate the funds (any amount) and tell any organization that is considering a grant to this nonprofit, that they will be beloved by the masses.

 Got questions? Email me, friend me, IM me.  (amy@mssoftserve.org) Because I love talking the talk and speaking with people who want this personalized site so that we can all cope more easily with MS. 

 Your support and encouragement has helped me (and our board of directors) to keep our eyes on the prize of helping all of us who are living with MS.  You’ve also helped to keep my energy and focus on this lifea mission. And like many of us who are living with MS, energy and focus aren’t always easy to come by.

So go grab your beverage of choice, sit back and watch some videos. And then tell everyone who you think will care about our effort and be interested in supporting it.

Then sit back and wait for those warm fuzzies, laced with enthusiastic motivation, to set in. 

Thanks~

 

*This number has been reported for decades and with 200+ diagnosed in this country a week, me thinks it’s a huge underestimate. Just saying 

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