Tag Archives: MS SoftServe

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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MS SoftServe in 2013

MS Softserve Gratitude Hello and Happy New Year~

I want to thank everyone who has contributed to MS SoftServe last year, and the years leading up to it! We’ve made so much progress behind the scenes and I’ve been remiss in reporting. ¬†I’ve been so busy trying to get it all together- the board meetings, the video production, the site content, the prep for the launch of¬†pre-site, the entire run of Breaking Bad, Homeland and an¬†embarrassing¬†amount of time playing scrabble, spell tower and flow. ( Ah, ADD- allows me to do so many things at once!) I try to reason that I deserve some off time, but my boss can be a real pain and she hassuper high¬†expectations¬†of me! ¬† (this is particularly challenging considering I am the boss of me!)

So if you have kept up to date on this blog you are saying to yourself “What happened to that fab fundraiser that was to take place in The Village last year?” ¬†Well The board determined that it is a greater priority for MSSS to raise money for the site’s production and that ¬†events like this, while¬†important in spreading the word of the MSSS mission, ¬†require a lot of elbow grease and I’m sure you’ll all agree that when living with MS – our elbow grease is heavily rationed.) As fate would have it, that decision prevented a collision with Hurricane¬†Sandy’s landfall.

As 2013 begins we will complete the pre-site with the help of board director Bonita Rutigliano and Clocktower Media. ¬†At which point Ed Conroy, our development consultant,¬†and I will go in to full gear fundraising mode. And before year’s end we will be well on our way in production of the site. You know….. the one that will be a groundbreaking tool to help us live, learn and teach about our unique version of MS.

I know, I know… you are sitting there wondering… How can I help?

I’m so glad you asked because there are so many ways to be a part of this production. Yes, donations are important but we are also are in need of volunteers who have expertise in writing, accounting, editing, web management-ing, PR ¬†or just plain word-spreading.

FUBU: This is a for-us‚Äďby-us production and your involvement will make for a rich learning site that meets the needs of the diverse community that we are. And¬†by highlighting the PWMS* who believe in this effort will be an important component in fundraising. So, write a letter, a note or better yet, record a video. Tell funders why MS SoftServe will be so important to you as you cope with your ¬†MS. ¬† Please check out these videos¬†that feature directors who have made the case for MS SoftServe – Let’s add your voice to that team!

Until next time!

Amy G.
(Living with it since 1988!)
*people with MS

MS Softserve EIN

// //

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Long Time No Talk; But Lots to Report!

Okay. I’m gonna do it. It may not be New Year’s Eve, nor is it my birthday. It’s just a normal July Sunday; but I’m going to cast my resolution out to the blog-o-sphere.

Yup. I’m going to jump in to the pool of “blog spontaneity” and start doing regular updates about the progress of MS SoftServe. So, all of you who have donated time and money to this effort- will find the proof in the pudding of good use. How about weekly updates. That would be good. Not so spontaneous, but reliable none-the-less!

So here we go.

MS SoftServe is really moving along. (Don’t know what MS SoftServe is? Click here and here to update your neuronic-file!)

Right now, we (and when I say we, I mean me and the Board of Directors) are planning our very first fundraising event at The Cherry Lane theater in NYC’s¬†Greenwich¬†Village. (Get out your digital planner and be ready to type!) It’s on October 22nd at 7pm. And as you scratch your head, wondering why this would be happening on a Monday night, I’ll ‘splain. Monday is the night that theaters are dark. So with that… we are planning to make Monday the new Saturday. At least this particular Monday in October. All the the others will still be regular old Mondays!

The Cherry Lane Theater is a non-profit that has generously donated it’s space for this event. (Thank you Cherry Lane!) And her is the skinny on what we are using it for.

MS SoftServe Presents: The Fingerprint Variety Show

That’s our name in progress. Please feel free to vote on it using the poll below.

As we all know, each of us living-with-it have our own unique MS fingerprint. And with that, our own creative story to tell. So, this event will not only provide the stage/video to convey your story; it also will launch the new site that will take place of our staging ground. If you’ve been to¬†mssoftserve.org¬† you know that the web space saved for MS SoftServe is a little out of date. Back in 2007- I knew what I wanted to do, but did not yet have the means to do it. So this “staging ground” served as a space saver and a way to¬† get the word out. And it has worked very nicely if I do say so myself. (Thanks to Bonita Rutigliano for the site design and Kate Milliken of Milligrace productions for ¬†the video on youtube.)

But now it’s time for something up-to-date. So on October 22nd we will be celebrating the launch of the new space saver that will also be an interactive functional site that will allow for detailed information (including but not limited to: the board of directors, the mission statement, the strategic plan, the grant application narrative and a place for you (yes you!) to make your mark by letting us know what you are looking for in your learning site.)¬† In short, this “launching pad” will be an up to minute functional site that provides Everything you’ve wanted to know about MS SoftServe*, * but didn’t know who to ask!

The event will include a stage performance for which we are looking for people with talent (musicians, actors, artists, comedians… et. al.) who either have MS or care about someone who does. (If you fit that bill and will be in the tri-state-area in October- do tell!)

In addition to the performance, the evening will include food, a fabulous raffle, a video of those of us who want to tell our story without standing on stage, food, wine, beer, and food. (have I mentioned food?)

MS SoftServe (remind me of what that is?)
A space where each one of us can learn about our unique version of MS without unwanted, irrelevant¬†information and the anxiety that comes with learning more than you want. We will also be able to choose how we like to learn. Are you a visual learner who likes movies? You got it! Want an animation? It’s yours! Does a podcast fit your world? Click away! Learn about what you want, how you want. And here is my favorite part: You, as¬† a registered user, will have the opportunity to create a personal URL that describes your individual version of MS.¬† When you have this lifelong variable disease you have to explain it to everyone. With your own personal URL you can explain/educate/inform everyone in your social/familial/professional network about your unique MS without freaking them out with possibilities that may never be an issue for you. I don’t know about you, but the more people around me that aren’t freaked out by me, the better.

So if you have any ideas for our performance, or want to get up on stage and show us how it’s done. Let us know. ¬†If you have the means with which to sponsor, underwrite or donate to this event, then bring it! As you probably know by now, MS S0ftServe is a 501c3 non-profit. What that means is that all donations are tax-deductible. What it also means is that your support will be helping so many of us living with MS- empowering us for our life of learning. Consider it a Karma explosion. (in a good way!)

The take-away:

  • MS SoftServe is coming.
  • This fundraising event will bring us closer to it as we launch our new launching pad. (I know… redundant- but you get the gist!)
  • We are looking for performers
  • We are looking for a stage director
  • We are looking for a famous person who cares about PWMS and will make our evening even more exciting than a food related thang.
  • Got stuff? (Want to donate items to be raffled?)
  • Donors Donors Donors (Donate Donate Donate) Want to sponsor the event and get your company’s logo on the shirt, banner, program, etc. Let me know
  • Make your mark (Spread that fingerprint all over the digital map as you represent just how diverse this disease can be.)

Talk to you next Sunday-  with more riveting information that will be more succinct! (promise!)

~Amy G.

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MS SoftServe: We have logo, we have logo!

Check out the brand new MS SoftServe logo! Thanks to Mark Miller of Aesthetica Studios we now have a recognizable identity… like Volkswagen or Apple. ūüôā

With Mark Miller, MSSS continues with the approach we started back in 2007 when Kate Millikin produced the film that has served to spread the word (and visuals!) about MS SoftServe far and wide. I met Kate at the NMSS convention in Dallas that year and with the start-up grant awarded by the MS Society, brought her company, Milligrace Productions, on to create this important film! I love the idea of producing as much of this site in FUBU fashion as possible. ( For Us By Us)

There is so much talent in the MS community, doesn’t it make sense that we support each other in more ways than one? (The first being the digital shoulder to lean on, of course!)**

Mark Miller did a bang-up job on this logo and that he is also part of the club really bumps it up a notch. As they say “You don’t get it, unless you get it!” ¬†And now MSSS has it!
We have a lot of exciting progress to report, so expect regular blog updates and a whole-lot-o-enthusiasm coming your way!
TTYS!
~Amy

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MSSoftServe’s first real time director’s meeting!

At the end of May, MS SoftServe held the very first “non-virtual”¬† meeting of the board of directors. No more interruptions when the web-servers come to a grinding halt.¬† No more words incorrectly finished by smart phones to slow us down. (What does she mean by “kinding honey through muck-raising?) It was real time, real energy and real progress.

The National MS Society in NYC graciously provided the use of their spacious conference room- where 8 of us sat down and got busy. We were joined via conference call by 2 more board members, our development consultant Ed Conroy and our web developer, Tim Mushen of Clocktower Media.  The minutes detail all we accomplished and set the stage for what we intend to do.

  • New ByLaws were proposed
  • Committee members nominated
  • Officer election planned
  • Future grant applications discussed
  • Strategic plan update needed
  • An add-hoc committee established to plan a fundraising event this Fall.

Calli Higgins, Rosanne Limoncelli, Laura Frost, me, Rosalind Kalb, Bonita Engel and Stephen Krieger (not pictured.)


We brainstormed (so to say) about foundations that will recognize the importance of MSSS and how will empower those of us who are living with it. We developed an ad-hoc committee responsible for fundraising events (including a very exciting happening that will take place NYC this October replete with music and beverages and a that warm fuzzy feeling you can only get while you are making a difference in the  world!)

In summary: The sky is the limit and we’ve¬† boarded the shuttle. Look for big things right around the corner!

(Note to you: “follow” this blog!)

Bonita Engel and Rosalind Kalb

Dr. Stephen Krieger, Calli Higgins

Calli Higgins and Rosanne Limoncelli review ByLaws

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So where were we? Progress Report 1

Okay, so here it is, the first status report for MS SoftServe.  So much news and an endless supply of digital words. Here we go!

After 4 years with my nose-to-the-grindstone (gotta love that image) I am happy to report that our progress is not unlike the rabbit speeding enthusiastically toward the finish line. Granted the length of this race would intimidate Lance Armstrong; (I know, he bikes, they run… but you know what I mean!) But we’re approaching the race with the careful, deliberate pace of that tortoise. The cool part is that by working as a team, the rabbit and the turtle will cross the finish line simultaneously.¬† And so will¬† we! We have a great team of people who are working together, contributing their time and energy to MS SoftServe, and we have started this race with a bang. (More on them later!)

What began as my thesis for a master’s degree in educational technology has become my life’s mission. Over the past 4 years I’ve dedicated all of my available energy to making this site happen. Granted, with a family, working full time and that whole “MS thing,” my window had a mere crack of an opening.¬†¬† But last year when I went on “this-ability” the window opened wider…and ooh‚Äď feel that breeze a blowin’ in!

The Cliff’s Notes update will immediately follow these few sentences.¬† The whole story in riveting detail will be posted in the next few days. I will start at MS SoftServe’s inception and take you through the trials and tribulations, that have brought us to today.

And so, I bullet:

‚ÄĘ 2006– I graduated NYU Master’s in Educational Communications and Technology with a design for MS SoftServe as my thesis.

‚ÄĘ 2007– I told anyone and everyone who would listen about MSSS, hoping to find direction for funding.

‚ÄĘ 2009– I found a grant writer through a facebook connection (how cool is that!) and now we are full speed ahead. With his help we’ve developed a strategic plan, a case statement and a template for grant applications. Good Times, Good Times!

‚ÄĘ Also in 2009, I met Graham McReynolds of the National MS Society and pitched the SoftServe concept to him. He determined that there couldn’t be a union of this concept within their site and so the NMSS gave MSSS a $3,000 start-up grant. (The first ever of its kind!)

At this point it became clear to me that MS SoftServe should be a non-profit and so I learned all I could about setting that up. Then I signed up with legalzoom.com so I wouldn’t have to learn any more!

2008– I began to assemble a Board of Directors and waited for my application to be approved by the IRS. And then it was approved! (whoo hoo!)

I digress for an expression of gratitude- The donations we’ve received over these initial years have made all of this progress possible. Had the supporters of MS SoftServe not come out in such strong numbers, I would still be scratching my head, wondering how to make this happen. THANK YOU ALL for your contributions and support. We wouldn’t be here without you!

So that should whet your appetite! Check back in a few days for the compelling tale of forethought, good fortune, and the drive of one very motivated person along side the many talented & dedicated peeps who have joined her in this effort. And if your worried reading this will fall off the bottom of your to-do list, subscribe to this blog. Over there on the left…. in the column… See it?

~ Amy

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MS SoftServe’s New Blog!

By popular demand (and that it finally occurred to me!) MS SoftServe has a brand new blog.¬† You’ve heard about the site-to-be; the place where you will be able to learn about your unique version of MS. (If haven’t heard, check out this video that tells all; or at least most. ;))

Now, the inquiring minds who want to know about our progress, don’t have to throw their hands up and wonder out loud “When is this site gonna happen?”!¬† They (you) can just come here and find a wealth of information that will include, but not be limited to: progress reports, accomplishments, ideas & random comments from the site’s founder, details of our future plans, grants we are applying for AND most importantly-¬† a space for input. Because this site is dedicated to meeting the needs of every individual living with this annoying disease, we want to hear what you would find most useful in this dynamic tool.

MSSoftServe will be the first site that allows you to determine what information you want to know. No more learning about things that may never affect you and just fuel your fears. ‘Cause let’s face it, one the hardest things about this disease is that we have no idea what tomorrow with bring.

So let’s have some control for once! When MS SoftServe is live, you will not only be able to control the info you are exposed to, you will also have the option to learn the way you want. We all learn best in different ways. For me, I need visuals; words alone immediately slip from my memory. (Which explains why I can’t remember a book I read last year!) But when something is explained visually – I’ll never forget it.¬† Because everyone is different-¬† this site will let you choose what is best for you. There will be options to learn by reading, watching animations or videos (of MS nurses & people living with it) and listening to recordings of people explaining concepts of the disease.¬† You will have the option to take and store notes digitally and record yourself explaining that symptoms that seem to defy words; and all of this can be emailed, downloaded (to your PDA or ipod), collected in your own online store-house of information. And get this:¬† you will be able to create your own URL that explains your version of MS. How cool would that be to send friends and family to a site that helps them understand your specific situation. (and doesn’t freak them out either!) The list goes on…¬† learn how to educate different people in your life (colleagues, kids, parents etc.), choose the language level you want to use (everyday, scientific, or simple straight forward), or select areas for tips on communicating with your doctor, understanding the news… and on, and on.

So that is it in a nutshell. Seeing this project to life is going to be an exciting and satisfying ride.  Hop in the back and come along!

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