Category Archives: Check us out!

Right (write) now!

Do you find that it’s really hard to read an entire essay, post  or article online? I  think attention deficit is a sign of these digital times- there is just too much distraction.  Information overload on the web leaves many people running and screaming for focus and peace-of-mind. (can you say Candy Crush)  And it’s becauseof the fact that I too am soaking in the overwhelm,  that I find it really hard to write and spread the word about MS SoftServe. Does anyone reading beyond a headline and the first two paragraphs?  Is everyone like me – a Scanning Queen? (use Abba harmonies here). But with your help (ie. reader stats)  I will push myself away from the wall and on to the dance floor. Please  join me out there!

The “Right Now- MSSoftServe Update”
You may know that mssoftserve.org is currently  a word-spreading-fundraising site. It’s the site that will raise the money to produce the customizable site  people with MS want and need. ( link )  We are using the site to serve as the aforementioned as well as a tool for larger outreach. (ie. fundraising outreach to the foundations and corporations who can get on board and make the site happen).

So what we now need everyone to do now is represent.  We need to send a message to the granting organizations to tell them that MSSoftServe is necessary to all of us who are affected by Multiple Sclerosis. To tell them that meaningful learning with more control and less anxiety will be a critical part of how we cope with this disease. And that we need to be able to teach everyone around us about our unique version of MS- without the unnecessary info that will only make our loved ones confused and anxious.

How can you do that, you ask? I’ll tell you (with links!)

There are a couple of ways that you can make your opinion known on mssoftserve’s current site. You can submit a testimonial (words and/or video).  And if that doesn’t fit into your schedule, just “sign” your name and we can add you to the “big list” of people who are waiting with baited-breath for this to hit the web. (send it to the contact-us link) If you need an inspiration, please have a look-see at the testimonials of the board of directors. They don’t have to be long, nor aesthetically pleasing. They just have to be you! And while you’re there, browse around And if you want to be a part of MS SoftServe in any way please email me!  (amy@mssoftserve.org) And put something that really sticks out in the subject line so that it doesn’t blend into the rest!

Well…. I’m hoping I haven’t left you lost in word count. In the future I will cut-to the-update-chase in weekly posts.

(C’mon Amy, you can do it! Write now!)

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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–by-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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MS SoftServe- a reboot~

We all have to reboot sometimes. And while its usually a frustrated moment that inspires this desperate act (Ugh, I’ll just reboot) the end result is often a deep relieving exhale. (sigh) Such is the case for the MS SoftServe fingerprint fundraising party planned for the end of October.

The launch of the new preliminary MS SoftServe site was on the calendar at  The Cherry Lane Theater in Greenwhich Village and let me tell you- that theater is one swank space!  In spite of  the hard work of the MSSS board of directors – our ducks hadn’t lined up in the row of seats we reserved for them.  So, we are doing a CMD-X (cut) and a CMD-V (paste) moving this party fundraiser extraordinaire to in 2013. Which, as those of us who are over 40 know, is pretty much tomorrow!  So keep an eye out for those updates- and look inside yourself to determine how you might be a part of it. (For clarity… check out this post that described what would have been!)

So, on to the exciting stuff. As many of you know MS SoftServe will be the site that allows each of us to live and learn on our own terms. (I say that so many times in a given day- I hope it continues to ring significant!)  What currently exists at MSSoftServe.org we like to call the staging ground. It’s a web place holder if you will, that has been a great way to spread the word. And the word is what we have spread!  With the modest funds that we have been granted, we are partnering with Clocktower Media in Seattle, a new, current, up to date, easily editing launching pad- which is what we like to call it! (sweet use of metaphors, right?)

This new site, at the same address will have all the info you need to know about the MSSoftServe production- in its most current form.  I’m in the process of getting all of the information uploaded and shooting the videos of important people talking about why MSSS is so valuable to the community.  So, with all of the information about what the site will be,  the testimonials, the documents any foundation might want to see and videos from you, (don’t look behind you, I’m talking to you!) and all who want this site for immediate use- will be an excellent way to gather the funds we need to produce The Real McCoy.

Check out this terrific video of the renowned MS physician Dr. Aaron Miller of the Corrine Goldsmith Dickinson Center for Multiple Sclerosis at Mt Sinai Medical Ctr. And stay tuned for more video-validation from our prestigious board of directors. (Here’s where you make a note-to-self and subscribe  to this blog!)

Roll Tape:

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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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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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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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