Category 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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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‚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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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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