We’re 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’ve created the launching pad, or a diving board, or gateway that is alive and well at mssoftserve.org. Whatever your preferred “jumping off” 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! 😉

(If for some reason you haven’t heard about MSSoftServe check out the video… I’ll wait for you. 🙂 )

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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In the beginning~

Revisiting: Since I started working full time on making MS SoftServe a reality I’ve stopped writing for my blog- trying to dedicate time to the cause. But its been hard. Writing has always been an important part of my coping mechanism- controlling my lack-of-control-de jour by pushing words around is so empowering. And connecting to my MS community- finding people who relate has been an amazing boost in my day to day. So… I’m rereading and re-sharing my posts. If you have a minute or 5 to read… please do. It really fleshes out the satisfaction levels! So here it is. Please join me in 2007!

http://mslol.me/2007/05/14/in-the-beginning/

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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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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. 🙂

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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The Summer Is Over!!!

I had a crummy summer. In addition to my heat induced MS symptoms,  I was living with ridiculous amount of stress (category 5 on the Doppler and a 7.5 on the Richter scale.) And as you know stress makes MS worse- and then increased MS symptoms makes me scared I’m progressing, and is stressful. Now that is a loop that is hard to get out of. The hand draws the hand that draws the hand. Though this hand is numb and tingly, and so is the other.

Lemonade, Brownies and Great Karma~

But there were some summer highlights in the MS SoftServe realm. Two grass-root or shall I say front yard, fundraisers kept the momentum going. The Harris family donated a portion of their moving sale profits ($300!) to MS SoftServe, that with local artisan Vicki Pollack’s fundraising ceramic sale bringing the total to $500 for the cause.

Just before the summer, we celebrated the award of our first grant- and are looking forward to submitting numerous applications this Fall. A shout out  to our strategic planner and grant writer Ed Conroy. He works for a ridiculously small fee and keeps MSSS moving forward at great speeds. His expertise is invaluable. His knowledge of non-profit development is endless. Every time we speak I learned volumes. And he’s charming to work with ta boot!

I know what your thinking. You want to know how you can help make this unique website  happen. You know how much value it will bring, not only to the MS community, but to you personally! (If you’re not clear on that, check out www.mssoftserve.org and the video on this blog.)

So, let’s talk  Alexander. He’s clenched in your hand as you order the venti, double caf, skim latte for you and your friend. And yes, this beverage will add spring to your step; but you might consider using Mr. H. in another way. How you ask? As a donation to MSSS, that’s how silly!

While $10 doesn’t seem like much, it plays well with others! Every bit becomes a byte and brings us closer to making this site a real live entity, one that will make a huge difference in the lives of all of us living with MS. Check out the video if you need a refresher!

So enjoy the crisp days that lay ahead, and if you are living in a state or country that doesn’t know from fall foliage of white blanketed ground – check out Polar Products- They really helped me get through the hot summer. (And they truly care about their customers too!)

Subscribe to this blog to keep up with the progress MSSS. The heat is up, in a good way!

Amy G.

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