Monday, September 15, 2014

Genzyme's Challenge MS Exhibit During #MSBoston2014

I mentioned yesterday that last week #MSBoston2014 was held here.  It was a meeting of over 8,000 scientists presenting their MS research.  It was held in Back Bay at the Hynes Convention Center and since the Pru is attached Genzyme used it as an opportunity to have an exhibit that could raise awareness and allow people to experience some of the more common symptoms.

I was invited by Ilana who works for a PR company and Genzyme is one of her clients.  She found my blog somehow and wanted to get my opinion on the exhibit! I was more than happy to check it out especially since it included a dinner date with a friend afterwards!



There were three hands on exhibits each having to do with a different MS symptom - fatigue, cognition and vision impairment.

The vision exhibit was the most eye catching while walking through the mall (see what I did there - haha)!  You looked through the glasses to see the MS info in the photo below.  Only it wasn't that clear. . .



When looking through the lens you saw the info the way someone living with MS with vision issues might see it.  Very blurry and not too easy to read!

The next exhibit showed what it might be like for people dealing with fatigue.  Fatigue is one of my biggest issues so I know first hand how that feels.  I think this exhibit gave a great visual for what it is like.  These over exaggerated cups, plate, salt & pepper, etc show just how it might feel for someone with MS to have to set the table when feeling fatigued.  They look at a cup and it may look like it weighs 100 pound to them and feel that heavy to pick up!

Oh and that wine glass - that was about the amount of wine I felt I needed the night I attended this exhibit after a particularly busy/stressful day at work!

The last exhibit was a memory game to show what it might be like for people with MS who have cognition issues.  They basically showed you some numbers then turned them around and you had to recall the numbers.  For people with MS remember simple things can be very challenging.  I don't deal with this personally thankfully but I have friends that do and I know it is very difficult for them especially when working.

I think Genzyme did an excellent job with their "Challenge MS" exhibit.  It raised awareness for sure.  Just in the time I was there I saw a ton of "regular" people walk by and check it out.  How cool that people were willing to take a few minutes out of their evening to learn more about MS!

If you tweeted during the event to @genzymecorp using hashtag #GZChallengeMS they will pledge volunteer hours to the MS community (one hour for each tweet).  Very cool!



Sunday, September 14, 2014

#MSBoston2014

Something big happened in Boston at the end of the week.  MS Boston 2014 aka The Joint ACTRIMS-ECTRIMS (Americas Committee For Treatment and Research in Multiple Sclerosis and Europe. . .) Meeting was held here with over 8,000 scientists in attendance who are researching MS.

It was the biggest MS conference ever and tons of research was presented.  It was a big deal and I was honored to be invited to two different aspects of it and wanted to share a little about it with all of you!

The National MS Society of Greater New England invited me to be in the live studio audience during a live webcast titled "Research Advances from the World's Largest MS Meeting." The panel included Dr. Philip DeJager from Brigham and Women's Hospital in Boston, Dr. Don Mahad from University of Edinburgh, Dr. Ellen Mowry from John Hopkins University and Dr. Timothy Coetzee, Chief Advocacy, Services and Research Officer for the National MS Society (in simple terms - 4 VERY smart people)!

Photo by Steve Sookikian of NMSS
In the hour broadcast we heard a summary of much of the research that had been presented in the previous days including information about Progressive MS (including a new $30 million dollar grant that will go toward research specific to Progressive MS), genetics, wellness and rehabilitation, and repair and protection.

They talked about risk factors for MS (smoking, history of mono, obesity, family history - NONE of which I have - go figure) and how those risk factors combined make for an even stronger pre-disposition for MS then add to that a specific gene and BOOM you've got MS.  Still doesn't really make sense to me since I have none of the major risk factors but still very interesting info!

They also talked about myelin repair which 20 years ago was not even something scientists thought was possible and today they DO!!!  They feel in the next few years they will learn even more about this which could mean so much for MS patients living with disability.


This was my view from the back of the room!  We were at WGBH which just happens to be right down the street from where I live.  During the broadcast people could write in and ask questions which were answered live.  We could also write down questions which were answered.  Very cool!

It was so interesting to hear about all of the currently going on and to know so much more is in the works.  The MS community of scientists are the first to combine their efforts to share their research and work TOGETHER (what a novel idea right?!)  Scientists are usually competitive but they finally realized they would have better luck at figuring out this crazy thing called MS if they worked together.  So glad they were able to put their competitiveness aside for my/our benefit.

I don't think the webcast has been posted yet but it will be so check back here to watch it for yourself.  You'll feel so inspired and hopeful.  I feel so grateful that these very smart men and women are working so hard to find a cure for me!



{Linking up with Leeann and Kimberly}

Saturday, September 13, 2014

Bean Team Stickers From Signazon.com

Right before the MS Challenge Walk, Signazon.com offered me the opportunity to review their 3x3 vinyl stickers and it was perfect timing!  We were able to use them at the walk to decorate our stuff.  Below our some iPhone photos of just a few places we used them!

Before the walk I found these orange thank you cards and knew they would be great to use for a little note for each of my teammates.  I had my mom leave them on each of their bed's so they would find them on the first day after walking 20 miles.

The stickers made the perfect finished touch to the orange cards.  In case you didn't know orange is the awareness color for MS!





We put stickers on our water bottles, luggage, waist packs and anywhere else we could stick them. We wanted everyone to know we were The Bean Team and I think it worked! 

The stickers are great quality and held up really well.  They stick well to many kinds of surfaces which is great too.  I still have a bunch left so I plan to give some to my supporters and sponsors and use them at future events!

You can order your own stickers from Signazon.com here.

Thursday, September 4, 2014

On The Eve Of The MS Challenge Walk. . .

I can't even believe that today after work I will meet up with my teammates to car pool (we're so green) to the Cape for the MS Challenge Walk!  It's here!  It's here!  Am I ready to walk 50 miles in 3 days. . . well I sure hope so because ready or not it is time!

In case you missed it I guest blogged on Kate's blog last week sharing 10 Things (Kate Needs) To Know About Walking 50 Miles For MS.  I think it was kind of funny if I do say so myself!  Go read it and wish Kate luck since she is a Challenge Walk virgin!!!

Another MUST READ is a post on my friend Christa's blog.  She is the sweetest!

Now that you've finished all that ready you can enjoy some photos from my last few training walks!




The above photos are from Callahan State Park.  My clients wanted to go for a "hike" with their dogs so we did. It was a GORGEOUS day and I took these photos with my iPhone.  The sky was that blue!

After the "hike" and prior to my real training walk with Emily I had to carbo-load.  Thankfully the Roxy's food truck was in my neighborhood that day.  Yum!



Emily and I walked from my apartment along the Charles back downtown.  She did 13 miles since she walked to my place and I did 10.  It was a great walk and the time went so much faster with someone to chat!

After that 10 mile walk I totally deserved a reward!  JP Licks that night for an ice cream treat was just what I needed.



This past weekend I did a shorter training walk - about 4 miles I think (I totally can't remember now).  How adorable is this bike!?  Love it!


I already told you about my adventure at Crowe's Beach.  The above photos are from that day when I walked the sand (my legs felt it the next day).  Seriously one of the prettiest places I've see on the Cape!

So there you have it.  Training walks are DONE!  It is now time for the real thing.  20 miles on Friday, 20 miles on Saturday and 10 miles on Sunday.  Please pray for no rain, no blisters and good health for all involved.  I know The Bean Team is going to have an amazing 3 days!

THANK YOU to everyone who has donated and supported me/us.  I appreciate it so much. 

Follow me on Instagram this weekend to see photos from the event!!!

P.S.  There is STILL time to donate.  Every bit helps.  A donation in ANY amount.  Donate here!!!

Wednesday, September 3, 2014

Crowes Beach And Sesuit Harbor (Exploring Cape Cod)

I hesitate to even share this with you because. . . well because it is amazing and I don't want it to get too crowded with all of you rushing there next summer! Haha!  On the other hand I love to sharing amazing finds with my blogging friends so I'll tell you about it as long as you promise not to tell too many of your friends!

Last weekend while I was on the Cape I wanted to get a last few training walks in before the big 3 day 50 mile MS Challenge Walk this weekend.  I was sick and tired of walking the same route so I googled and found Crowes and I'm so glad I did.  I can't believe this place has been so close by all along and we never knew about it.  It is the most gorgeous secret beach that you can drive onto. . . I walked of course but I can't wait to go next summer!

Oh and it was a short walk distance wise for my training but it was in unleveled/unpacked sand so it was quite the workout!









After my walk I took a quick pit stop at Sesuit Harbor just because.  It is a cute area to grab a bite to eat and boat watch!











I'm so glad I stopped by Sesuit Harbor because I saw one of the cutest things I've ever seen.  These two dogs were just hanging out waiting for their owner(s) to return.  Every person that walked by them stopped to pat them because they were just so cute and friendly.  I swear the owner(s) could have charged admission to visit them.  Lol! 

P.S.  Don't forget our deal ok!? :)

P.P.S. All the above photos are taken with my (crappy) iPhone 4 and are unedited.  It was a gorgeous day with a beautiful blue sky!