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Posts Tagged ‘MS Awareness Week’

I am so thankful to all my Team Members and Sponsors for their support this year. We had a great day for the walk, near eighty degrees and super sunny. Dwyer Stadium in Batavia is a great location and this is the third year we have participated and it has grown so much since we started. I’m not very good at ball parking numbers in crowds but I would easily say the number of walking participants has quadrupled. There’s still time to help Team March reach our goal of $5000 (we are a bit shy of our goal) so please click HERE to help get us there! Every little bit helps.

I want to take a quick public bloggy moment to say a special thank you to my Cousin Courtney who has outdone her fundraising self again this year. At the time of the Walk MS on Sunday she had collected from 52 sponsors for a total of over $2,000! And a special thanks goes out to all her co-workers at Fisher-Price in East Aurora, You are helping so many Upstate NY MS patients and families – Thank You so Much!

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Happy St. Patrick’s Day! I couldn’t help myself and had to post an Orange shamrock!

Even though I come from good Polish stock, St. Patty’s day always held a special place in our hearts growing up. My grandparents were married on that day because you couldn’t get married during Lent, but only on St. Patrick’s or St Joseph’s feast days. So we always celebrated Grandma & Grandpa Daminski’s Anniversary.

Gram would be amazed at the choices for a St. Patrick's Day Wedding theme today!

Grandpa was always in charge of the St. Patty’s float for his church’s entry in the annual parade. In the weeks leading up to the parade I remember helping Gram make hundreds of tissue paper carnations which would be used to cover the float and the visiting Grandpa at the workshop as he and his buddies were busy smoking their cigars and debating design elements. Ah the things we remember as kids…

Thank you all for tuning in for a Wonderful MS Awareness Week of crazy posts. I hope you learned something and enjoyed yourselves but most of all have a greater awareness of those that might be suffering from ANY invisible illness or disease. We may look great on the outside, but some days we really are just trying to fake it!

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I’m off to lunch today with my Mom (her treat – Thanks Mom!) It’s an annual fundraising luncheon with lots of who’s who, volunteers, those of us living with MS, doctors, nurses, PA’s, and fundraising extraordinaires!

Mom and I have a lot of fun, we enjoy a great afternoon out together (which we don’t get very often), a great meal at a posh location (Locust Hill C.C.), and I take a couple of photos here and there trying to act like the press (for the blog) to see what some of the trendy fashionistas of the Rochester area are wearing and go home filled with courage, inspiration, and smiles! Last years luncheon was my first time at the event and I was so filled with hope after listening to the speech by Jennifer Mason. Be sure to click over Here to read about it!

I realize this week most everyone has been all about the Green and St. Patrick’s Day, it’s been very confusing for all my story timers as I read books about green and leprechaun’s yet am wearing orange and an orange ribbon for Awareness Week. Try explaining that to 1-3 year olds! But most of the tall people got it (I hope).

Please help me turn this Awareness of Multiple Sclerosis and the celebration of Green into the movement of some of your hard-earned Green into Orange! Please donate to sponsor Me and Team March as we Walk for MS this spring on Sunday, May 20th. Click here to sponsor us!

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Fun!

Just in case you missed the press release earlier this year:

PANTONE 2012 Color of The Year:

Pantone 17-1463 Tangerine Tango

So here is my Ode to Tangerine Tango!  (cue the band)

Check out this blog post from How About Orange for the latest in Tangerine Tango Sephora products.

Be Brite Baby!

Yum!

photo by Chris Johns

Just my size

Another really great orange fashion post over here at gracefully50!

good for fencing?

So awesomeness from etsy….

What kids bedroom wouldn't this look cool in?

K for Kelly!

Something orange-y to knit with.

Just because he's a llama and a party animal!

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The MS Society released a new campaign this spring to help increase awareness, help MS families, patients, and assist with education and of course fundraising. (Big Sigh) I’ve been around the not-for-profit world (public libraries) long enough (14 years) to know when there is a big push coming on, and yes, this is the Big MS Walk & fundraising season…

BUT this copy did make me stop and think! It did hit HOME! And yes! IT is personal!

Shortly after I was diagnosed and accepted the news, I told close family and a select few close friends and began the process of treatment etc. Then I started to notice that things began to get a little funny with a few of my friends, and not the ha-ha funny. I thought I was strong enough to begin telling people about this disease about which I knew very little and was learning every day, and suffer the fall out, but it turns out MS really does Kill Connections! It makes it hard for some people to adapt to your disease even though they are on the fringes, they might not be your best friend, but to have them pull back, stop calling, stop asking to get the kids together for play dates, and even keep run-in conversations to small talk hurts. As a parent, I would have told my kids that these people weren’t really your friends in the first place, but golly, we were in our thirty’s! It wasn’t like I was trying to be the poster girl for MS at this point in my life either, I didn’t want lots of folks to know, I just wanted everything to go away and return to normal because my symptoms had subsided with medications after all. Cripes, this is the first time I’ve really even owned up to these feelings til now.  I do see these folks from time to time,  we chat, catch up on the kids goings on and leave it at that, but I guess there will always be a part of me that feels sad for them, I hope someday they can be strong enough for someone who will need them. But on to the positives….

MS has brought into my life so many wonderful caring people who didn’t even know I have the disease until recently! Crazy as that might seem, but if it weren’t for the disease I would not have made the choices or decisions I have in the past three years. Most of them have been family or health related with a focus on what makes us happy or content, or keeps us spending time together or apart (which ever is necessary at the time).

The MS Connection site went live this week and has been hopping since! I logged on and have been enjoying the resources and connections. I hope this format will continue and word will spread to others affected by MS; because there are days that even though I know how much my husband and kids love -love me there is no way they can ever understand how I feel inside, nor would I ever want them to, but sometimes it helps to have someone to commiserate with. Someone you just don’t have to explain a lot to, they just get it.

The MS Connection site is just one of the many resources that the MS Society funds with the Walk MS monies raised each year. So please consider giving to Team March or Walk with Me!

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Multiple Sclerosis can happen to anyone, but just how prevalent is it really in Western New York? Well, I did a little bit of research….

Western New York has one of the highest prevalence rates of Multiple Sclerosis in the United States. For adult MS, the incidence rate in the United States is 50 cases per 100,000 people. In Western New York, the adult MS incidence rate is 160 cases per 100,000 people.”  

This quote came from a Pediatric MS center in Buffalo, NY just 45 minutes away. Anytime I feel the least bit whiny about my measly symptoms all I need to do is think of the children suffering with this disease. It’s not fair having to sit on the sidelines watching your friends play.

Not only does MS affect families here in the US but the map below gives you a good idea of the spread worldwide.

Yep, the red zones are the ‘hot’ zones for MS. Ug! When I was first diagnosed the best blogs I could find at the time that were the most down to earth, educational,  most personable and ‘warts ‘n all’ were from bloggers in Australia. It had never occurred to me to look that far out of the country for folks in similar situations but nothing is really very different.

Which brings me to my advocacy piece of MS Awareness Week 2012: Team March and their pledge to raise $5,000 this year in the Batavia Walk MS. This will be our third year! Each year has gotten bigger, more funds have been raised, more Team Members have joined, more MS families have been helped, more Awareness has been raised! Please consider Helping: Make a Donation OR Join Team March.

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Please take a few moments to watch this video, I hope it will give you a better summary of the disease and it’s impact better than I ever could.

I was surprised how it moved me to tears and I knew all the statistics and live all the facts, but having them all summed up for me really hit home.

Wear your Orange this week!

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