Progress Report 2- “Details Baby, Details!”

From the moment the light-bulb floated over my head to the here and now.

Where did we come from , where are we going and Why aren’t we there yet?!

In 2006– I graduated NYU’s master’s program with a mission.  I was so excited about this idea, one that I knew would help so many of us with MS, I rushed down to my basement and created a promo DVD. I knew it would help me get the word out in one easy-to-send disc. I passionately (as passionately as one can be in one’s basement) explained all the details of the site and why it is different than anything that exists for those of us who are living with MS.

• In 2007- I set forth trying to figure out how to fund MS SoftServe and make it a reality. I had tons of enthusiasm and no idea how to channel it, so I distributed my DVD far and wide. I thought that sponsorship from the corporations that have great interest in supporting those of us with MS, would be perfect candidates.  I made contacts and sent them my DVD. And I waited patiently for one of those big corps to see the brilliance of this idea and slap a check on the proverbial table so we could start production immediately!  Silly me! It  took a year of passionate soliloquies for me to figure out that I was performing in the wrong venue.  One of those “aha” moments when all you can think to say is “duh.” It was at this point that I realized that this site couldn’t be backed by any company who likely has an alternative mission. This site would be about education only;  no distractions, no advertising, no doubt of its intentions.

During this time, I served on the steering committee for a collaborative of the National MS Society, Microsoft and Bayer Pharmaceutical. Their goal was to help people with MS to learn about of assistive technologies that can help them in their day to day use of the computer. They assembled the committee of people who are living with MS around the country. Using our feedback, they crafted a website interface that speaks to the MS community. It was here that I met Graham McReynolds and he has been instrumental in getting MSSS to where we are now.

Graham is the VP of Communications for National MS Society- He listened to my passionate description of MS SoftServe. (I’m really good at passion; not so much for on-the-fly fact referencing, but passion is my strong-suit.)  So Graham introduced me to the national web team who would take a look my concept for active, self-controlled web-learning. They speculated the possibility for crossover of MSSS with the NMSS site, which at the time was in the process of revamp.

They said “not-so-much” but in an unprecedented move the National MS Society gave me the first-ever grant of $3,000 to support the start-up costs for MSSS. (The Society is generally the recipient of grants- not the provider!) So a big thank you to Graham and to National! (Graham now serves on the Board of Directors for MS SoftServe) That award was a powerful shot in the arm – in a good way! I used those funds to have a professional video produced. (One that has a better feel than my basement!) With this video, I have been able to spread the word farther and wider, than we would have otherwise. The video was produced by Kate Milliken (Milligrace Productions). She is also living with MS and serves on the Board of MSSS. It’s a terrific piece that has proven to be all that I had hoped; it is perhaps the most significant tool in MSSS’ movement forward.  Check it out on youtube (or in the first entry of this blog)!

Also in 2007… (that was a big year!)

I learned all I could about non-profit organizations. I bought Non-Profits for Dummies and realized that I needed someone to hold my hand through the process. (non-profits for co-dependents?)  Enter After lots of waiting, and document filing, and waiting, and hand wringing, and waiting, and confusing legal-ease, and waiting, it finally happened.  SoftServe Matters, the nonprofit that will produce MSSS and other disease learning sites, got its 501c3 number.  Such a proud moment it was. My sweet little thesis is all grown up and accepting tax-deductible donations!

In 2008 I began to assemble a most impressive group of individuals for the Board of Directors. Including, but not limited to: renowned MS physician (Dr. Aaron Miller), experts in the fields of educational design, web design, medical writing, software developing, health communicating and 5 individuals who are living with MS. This group combines a broad range of expertise and enthusiasm. Their support, wise counsel and commitment to this cause,  . In fact, just talking about them gives me the warm fuzzies!  (For a more detailed list of the directors, please check the BOD page. And if it’s not there yet, I’m working on it!)

In 2009 we took a turn for the best.  Let me say first off that Facebook is an amazing way to connect with people living with MS around the globe. I’ve “met” people from Russia to Rhode Island; from Arkansas to Australia who are living with MS. I can’t begin to describe the support network that exists on these social networking sites; one I could never have dreamed of in 1988 when I was diagnosed. (Okay, I can begin to describe it, but it sounds so dramatic that way, doesn’t it?!)  On any given day I can set my status update to list my query de jour,  “I’ve got this wacky sensation in my big toe. Does anyone else have that?” and like magic I’m reading the 3o replies that appear on my “wall” in less than 8 minutes. The “cause” page for non-profits it bumps awareness and fundraising to a new level.  MSSoftServe has over 2,000 supporters and has raised over $2,500.  So it’s not all trading farm animals and sending virtual gifts to 200 of your closest friends. But I haven’t even told you the best part of Facebook’s MS community.

The progress of the site development had come to a standstill. My expertise and energy had run dry. I needed to find a grantwriter. I knew that if I could find someone who cares about this effort on a personal level, they would share my passion and dedication. So I started canvassing the world community that Facebook affords me. I sent messages to all my new MS “friends” asking if they know anyone who fits the bill. When running through my normal “do you know a grantwriter” schpeil with Jan Barfield, she responded with the “as a matter of fact…” I’d been dreaming of. She told me all about her friend Ed.  Ed Conroy is the Development Director at the Southwest School of Art and Craft in San Antonio. He looked great on paper and even better at the Tick-Tock Diner meeting. The expertise he has to offer MSSS makes a corned beef sandwich at Katz’s Deli seem like a snack.  His enthusiasm and interest the site was immediately evident.  His long-term friendship with Jan gives him a deep understanding of this disease and recognition of the need. The future of MSSoftServe was becoming startlingly clear. Ed has provided his service at a fraction of the cost we’d find anywhere else. At the time I had no idea just how good the bargain was. His knowledge base and dedication is well beyond anything I had expected and he came at just the right moment.

In the short time since he signed on our progress has been rapid fire. We (the board of directors, Ed and I) have established a strategic plan to guide us through the coming years. We have a case-statement and the supporting documents required for the grant application process. Our next step is to create a budget and seek out web design companies who work with non-profits at reduced rates.

Do you know any? 😉



Filed under Progress Report

2 responses to “Progress Report 2- “Details Baby, Details!”

  1. Shoot, I thought we might be trading farm animals, but
    the limping-for-no-clear-reason breeds.

    So impressed with your plans!


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