De-marcation of De- myelination!

In 1968 the price of a movie ticket was $1.50, The Beatles topped the charts with Hello-Goodbye and 2001: A Space Odyssey was on the marquee. On the longest day of that year, Vicki and Harris had a baby girl at JFK hospital in Edison NJ.

In 1988 a movie ticket was $3.50. Never Gonna Give You Up topped the charts, A Fish Called Wanda was on the marquee and that little girl turned 20 years old on the longest day of the year when another time maker entered the calendar. In Edison, NJ at JFK hospital where “little girl” was diagnosed with Multiple Sclerosis.

From that point on it wouldn’t just be movies and music that would mark the years. It would be an incurable, unpredictable disease that no one understood. The the MS equivalent to  “where we were when” JFK was assassinated, (not yet born!) when we heard John Lennon was shot, (7th grade listening to the radio before school), and Kurt Cobain took his life. (At a bagel shop in Orlando visiting my sweet Linda for that last wedding dress fitting) These are the push-pins on the map of our lives that we reference in all the years that follow. Who we were, who we are and what will we be.

 •  •  •

As you probably picked up, I’m the girl. Born in 1968, diagnosed with MS in 1988 and turning 46 on June 21st.  ( As many of my 40+ peeps know, time moves a lot quicker when you’re older. (Haven’t they figured out how to fix that yet?)  And our memory is so sharp for those long ago insignificant moments (insert tragic high school experience here) – but last week is a total blur. (In spite of that supplement of … what’s it called?, Oh yeah… Gingko Biloba!)

 Okay Amy. Stay on target.

The anniversary of my MS diagnosis- (way back when I was a 20-year-old film student in Baltimore) is celebrated yearly. And okay, it just happens to be my birthday… so some sort of celebration is a given- but that’s not what its about for me. It’s the demarcation of “I’ve struggled, I’ve endured and I’ve come out of it with a more meaningful life than I would have had I not been branded with these two letters.” Not that I would know the alternative- but it’s a great spin, dontcha think? But it wasn’t u 2005 that I embarked on my life mission: to make MSSoftServe a reality. The epiphany that changed the way I felt about my future, my past and my diagnosis.

It’s easy to remember how scary it was to be diagnosed with MS when no one knew much about it, there was no way of connecting to others who have MS (imagine that!) and no FDA approved drugs to treat the disease. But even in this digital age of connectivity MS is still scary and not just for the newly diagnosed. MSSoftServe will put the power to the people- so that they can learn without fear and teach with confidence. (for more specifics go to and watch some videos!)

As this longest day of the year approaches I am spreading the good word about MSSoftServe and it’s progress. We have raised money from individual donations, from grant awards and corporate giving programs. We’ve utilized those funds to hire a development director (at a very discounted rate) who has put together our strategic plan, produce the get-the-word-out-fundraising site and the PR that will let the people know what we need, what we want and how we want it.  With the guidance of our stellar board of directors– we expect to have the site production in full swing at by the end of this year.  And while we continue the work to make it happen- we need your support to get us to the diving board we are about to jump off.

So celebrate this birthday anniversary and give $10 (ie. a coffee date) to a cause that will make a difference for the 350,000 people diagnosed with MS in the United States and all the other peeps who care about them. Because you will be a part of the movement to change how we learn about chronic illness on the Internet in an empowering way.

Now tell me, in a rhetorical sorta way, how good is that Karma bump!?

Thanks for reading, supporting and encouraging. 🙂

• • •

BTW, $46 is a significant number (I’m turning that) $26 (I’ve endured that) or $16 because that rounds out the three suggestions in a neat way. Just saying! 😉

Oh, and one more thing- Make MSSoftServe (officially SoftServe Matters) your favorite 501c3 and will donate a percentage of each purchase! The gift of giving and getting in one click! 🙂

C’mon, Jump In. The Water is Fine.

An MSSoftServe update, We need your opinion and musings on water in my face.

MS SoftServe - on the cutting edge

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…

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