Tag Archives: JDRF Walk

Be good. ONE Walk

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little curl

How did I possibly breathe out of that nose?

 

 

There was a little girl
Who had a little curl
Right in the middle of her forehead.
And when she was good
She was very, very good
But when she was bad
She was horrid!

 

 

Let’s be good.  Let’s feel good.  Let’s do good.

It’s official.  Alecia’s Stem Cells NYC JDRF Walk Team is registered to walk again.

I want you.

I need you.

We need advocacy.

We need to push technology forward.

We need to a CURE.

Come walk with me.

Come support our team.

Spread the word.

Reach out.

What are you doing September 28th?  NYC.  Brooklyn.  A beautiful bridge.  13th Anniversary of the founding Alecia’s Stem Cells.  15th ASC Walk.  25th Anniversary of the JDRF Manhattan Walk.  My 35th year with a busted-up pancreas.  35…. WOW.

Type ONE, until NONE.

ONE WALK.

I need your help.

I.  NEED.  YOU.

For more info, come visit Alecia’s Stem Cells.  xo

 

Weekend Update – Cloning Plans

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Friday.

No time for blogging this week.  Not enough sleep… ever.  Must. NOT. GET. RUN. Down.

1.  JDRF NYC WALK- Still trying to get ready (there’s really no such thing as ready right?) and delivering as many shirts to people as possible the past few days (riding Citi Bikes like the Wicked Witch of the West also refering to myself as Mr. McFeely and making “speedy deliveries”).  I have no idea how I am going to get so much stuff (props, shirts, all my normal D stuff, baton, pom-pons) to the Walk site.  Must do laundry in next 48 hours.  Also must try cloning myself between loads of laundry.  Looking to make multiple clones.  Will definitely kill one clone for new pancreas.  If my current pancreas worked for 6 years-ish, I am excited for my new, cloned, works-for-6-years, pancreas.  Going to send other clones off to do projects.  I will definitely have my real self go to the Walk,  and will leave the clones at home to walk the dog and clean.  I hope they clean better than I do.  Hey future clones, the bar is NOT high at ALL (the home is a mess though).

IMG_42742. Due to demand (I know, that truly sounds ludicrous), we are offering a SECOND printing of our JDRF WALK Team shirts.  Lots of styles:  men’s, women’s, kiddie-poos.  I LOVE these shirts but, I am biased.  Proceeds go to JDRF.  Cool shirt goes to YOU!  <- Click there.  Get a shirt!

Our shirt sale ENDS Tuesday 10/1 (I can’t believe it’s almost October).

 

3.  A friend is making me a Dexcom case.  Yes, he has a rapid prototyping machine.  He is most likely going to kill me for posting this pic (but maybe he’ll be fooled by a clone and the one he kills can be the one I get the pancreas from?).  Hopefully he won’t see this before the Walk Sunday.  He was on my very first Walk Team in 2001.  As for the case, he has been prototyping samples with dimensions he found online (not using my actual Dexcom receiver).  Yes, this is kind of totally awesome.

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What I love about this photo… we are in a restaurant.  My friend has my Dexcom in a case that doesn’t quite fit.  There are calipers on the table.  We appear to be doing important stuff.  He is holding a glass of wine.  This is what we call a very productive design meeting.

4.  If you live on the East Coast and don’t already know this, WaWa makes the best coffee.  Also my favorite, and best tasting milk.  WaWa supports JDRF.  WaWa’s coffee just got THAT much better.  I wasn’t always a New Yorker people.  Support businesses that support JDRF.

Special thanks to my baby bro for taking the time to get me these pics. Let's go Eagles.

Special thanks to my baby bro for taking the time to get me these pics. Let’s go Eagles.

5.  I hope this laundry/cloning thing works out.  I change what I said before.  I would bring 2 clones to The Walk but dye their hair so everyone wouldn’t be confused.  I really need them to help me get all this stuff to Foley Square and pay for the cab.  One clone could carry my silver backpack (how else will people see the back of my shirt?) and the other one could help lug stuff around all day and get me a snack and maybe some coffee.  I’d put a clone in charge of our Walk Team table.  I’d go chat with the Animas rep about the VIBE.  I’d go visit my buddies over at Team Hoffmanderson and also a new friend at Team Pigs Are Precious. I’d put that clone to work (I “may” be taking this too far.  Lack ‘O Sleep).

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Giving the Shirt Off My Back (Well You Can Buy It)

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You know the NYC JDRF Walk is coming up (September 29th) and you also may know this is the 12th Year for Alecia’s Stem Cells (NYC) Friends and Family Team.  I’ve walked a lot of walks and I certainly keep talking a lot of talks.  If you’ve done the Walk, you know it gets maybe, just maybe, a we bit redundant over the years.  I am always trying to put a new spin on it. Boston team and NYC team in ONE weekend?  Check.  Design your own Alecia’s Stem Cells iron-on shirt party?  Been there, done that too (it took FOR-EV-ER).  Pirate shirts with me in a pirate beard (Keeping the ARRRR in JDRF?) and pirate sword fights over the Brooklyn Bridge?  Yep and arrrrr.

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So how do we spin it this year?  Ah my friends, this is the Until-A-Cure is found question.  I have been considering challenging my buddy Ben from Team Hoffmanderson to a Break-Off.  A Break-Off you say?  Oh yes indeed, I do say.  I would do my best breakdancing moves (I have 1 move, well sort-of 1) with Ben over the Brooklyn Bridge to raise money.  Does anyone want to even see that? Nah probably not.  Bikers would be yelling at us, kids would be tripping over us, we would give diabetes a bad name (Ha!  Like diabetes has a “good name”.  Funny stuff there).  So while I agonize over gimmicks, let me tell you a fundraising plan that IS happening… RIGHT NOW!

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Over the years, we’ve had some awesome and diverse Alecia’s Stem Cells shirts.  I’ve had a slew of friends take a stab at this (no needles were actually involved).  It’s been fun/crazy/ totally stressful getting designs ready, finding printers and making the Walk deadline.  I buy the registered team member’s shirts, but it gets tricky having a set number of walkers so far in advance.  This year, our shirts were a collaborative effort (Thanks so very much Deb) and then I had the same idea I seem to have every year … oh wouldn’t it be great if we could sell some shirts?  I saw a tweet from Tina over at Stick With It Sugar where she was selling her Walk Team’s shirts through a crowd sourcing printer.  It’s a long story, like a really long story, but I had such a great call with Tina, realized we needed to use a different printer if this was even going to be an option, looked up a Forbes article where the founder of the company Tina used named his competition (to all business owners, never acknowledge the competition in an article).  I called the competition the day before a holiday weekend, had a totally surreal conversation with the Principle.  He knows my work and is a fan of my former boss.  He also understood my Do Good, Feel Good philosophy AND they could do the job AND they wanted to help!!!

FRONT OF SHIRT_2013

So here’s the skinny.  I LOVE NY.  I HATE diabetes (See what I did there diabetes, I didn’t even give you capital letters, di-a-betes).  The back of our shirts have a tag line thought-up while looking over notes I took at a JDRF Walk Kick-Off/Research Update:

New Technologies, New Treatments, New York.

BACK OF SHIRT_2013

So, we are in the shirt selling business folks, But ONLY until 9/12 (SOON people, so very soon).  The shirts are great quality (Canvas and Belle who supply T shirts for Nordstrom which I wouldn’t know since we don’t have a Nordstrom in my city…. yet) and come in Mens, Ladies and even Youth sizes (this is a first for us).  Not only are the shirts cool, rad, awesome, fly, tight, sick ( <- that one annoys me), BUT the proceeds are going to JDRF!  Yep, our team fundraising efforts have a NEW spin… Team shirt sales!!!

So check ’em out and most importantly, PLEASE forward the shirt link to anyone you think might like one (or two) too!  Thanks y’all.

http://inktothepeople.com/private-marketplace/ink-detail/11041

 

Lucky 12

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LUCKY 12I pass by this patch of sidewalk almost everyday.  I noticed it again as I rushed home from the gym this morning.

12

12 is my favorite number.  12 is my “lucky” number.  Alecia’s Stem Cells was founded 12 years ago.  2012 wasn’t quite what I thought it would be.  There’s gotta a be a BIGGER 12 out there.  Please, please let there be a bigger 12 out there.

I received some horrible news from a friend over the weekend.  My Dad hugged me and I just started sobbing.  I believe that is very much a Dad/daughter thing.  Hug from Dad = tears from me.  Life has thrown me a slew of challenges, all in a row lately.  My Dad kept whispering in my ear, “It doesn’t make sense right now, but there is a plan for you.  Just remember, there is a plan for you.  It’s just a different path.”  There was some God stuff thrown in there too but that’s between me and Dad and well, God.

I was with the friend with the horrible news last evening (that is a terrible description by the way).  There were some tears.  We discussed many things.  She’s always supported my diabetes and JDRF projects.  I told her about the JDRF Walk Kick-Off/ Research Update I’d attended on Wednesday night.  I told her about JDRF’s encapsulation program (or at least what I understood of it) and all the things I learned last week.  I told her about how I felt inspired, a renewed sense of hope, again.  I told her about my friend who’s part of JDRF’s Voices Council and how she recently shared with me that she too felt inspired.  At the end of our meal, I think I’d not only given her a pep talk, but I’d also given myself one.  She kept telling me how much I inspire her.  Talking with her really helped inspire me too.  Sometimes, I think the energy you give off, really does come back to you.  I got the most positive e-mail from her first thing this morning.  It felt like a hug.

12

LUCKY 12.

I’ve gotta a lot of work to do.

Join me.  Join our team.  Get involved.

Oh, and if you don’t like me or think I’m a jerk or I talk too much, just donate to this guy.

The fundraising all goes to the same place although we seem to be in some sort of competition.  This is the photo he put on Facebook last night.  Yes, that is me.  No, that is not my quote.  If this quote raises funding for research, then yes, that is EXACTLY what I said EXCEPT, I definitely didn’t call anyone Mr. Strahan*.

Ben H

 

And if you’d like more info on Alecia’s Stem Cells, want to spy on how we’re doing, want to join our team, want to sponsor one of our walkers, want to donate, please go here AND read the post below this one for more ASC info. XO

* Team Hoffmanderson is an awesome team and I am extremely happy to call them friends.  I mean, they might not even be friends, but I’m happy to call them that.

 

Updates, Cussing and Such

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Busy, busy, busy so a quick update (also I have another post after this one):

  • I never finished the post about my eye doctor appointment.  So here’s the short summary.  I am fine.  I took lots of pics at the office.  I was there for HOURS.  Is anyone losing sleep at night because I never wrote the down and deep about my eye doctor appoint?  No?  Okay, let’s move on and I’ll get info together for another time.
  • I read this earlier today:  “To strengthen the muscles of your heart, the best exercise is lifting someone else’s spirit whenever you can.” – Dodinsky.  Do Good, Feel Good.

    Brooklyn heart

    Found on Sunday in Brooklyn Heights

  • My ongoing issues with my pump sites going bad immediately after inserting and blood bath moments in my bathroom have remained but I have had 2 good sites in a row so that’s encouraging.  The discouraging part is my insurance won’t budge on my allotment of sites.  I went through 6 in a weekend.  I will be completely screwed towards the end of this 3 month prescription and forced to either leave in sites too long or switch back to shots.  No way Jose.  I’m an Inset kinda girl.  I like awesome packaging the doubles as the inserter.  I like pink and blue sites (I’m totally anti green though.  TOTALLY).  Today I was able to try out the Inset 30.  Things have changed since I used the equivalent version (Silhouettes) back in my MiniMed pumping days.  Although the needle still looks obnoxiously rude (like it’s going to spew curse words I’ve never even heard at me), there is now an inserter.  Yeah, I was nervous putting it in but not that pale, sweaty way that used to happen as my hands shook back in my manual insertion days.  It’s funny though that just looking at this new (well new to me) site took me right back to my first NYC apartment and pep talking myself as my hands shook trying to get those damn sites in.  So, I am currently wearing my old blue Inset (I can’t risk another blood bath at work.  Mint green pants and a white lace shirt SO does NOT go with my ruby red blood).  I also have my Dexcom on my tummy.  I am one hot stuff robot lady today.  Woo Wee. (I can’t show the Dexcom because  I’m keeping SurfaceFine PG… well for today). 

    2 sites. 1 tummy.

    2 sites. 1 tummy.

  • I have finally finished my JDRF Walk letter.  I wrote an earlier version that I tried out on a few people last week.  It had one of 2 reactions.  It either made people cry, like really cry and hug me or TOTAL radio silence.  Like no email, text, IM silence.  Oh well.  My new letter is a bit long but it touches on what I think is important.  Once I clean it up a bit, I’ll post it here. 
  • I need to stop cussing so much.  I’m not sure if this is diabetes related or not.  F*ck Diabetes?  Yeah, totally diabetes related.  Oh and PG is over now.

You walked where?

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This is late but life is busy.  I already told you about my trip to the ER.  So now it’s time to flip the switch.  Sunday arrived (9/30), I told my stomach to knock it off, and we all arrived at the walk bright and early.  Here is the email I sent to my fellow teammates and supporters AFTER The Walk (with an updated total and some added photos):

What a day for a JDRF Walk! 

As many of you know, this year was our BIGGEST Alecia’s Stem Cells WALK TEAM EVER!  I could not have been more excited as Sunday approached.  (My friend ) D and I had our WALKS With FRIENDS themed shirts (hats & tote bags too) ready to go, we had a lot of newbie walkers, and for the first time ever, we had a whole bunch of my fellow T1Ds all walking with us too!  

As my fellow walkers know, Friday afternoon turned kind of crazy when I ended up in the ER, stayed there through early Saturday morning, had to cancel my interview on our local CBS Saturday morning show (to speak about JDRF, the Walk, and our AMAZING Alecia’s Stem Cells team 11th anniversary).  If I wasn’t so dehydrated, I probably would have cried a river BUT I did make it to Walk Day!  I think JDRF felt sorry for me and as a cheer-up, they had the President/CEO of JDRF, Jeffery Brewer, come talk to me at our Alecia’s Stem Cells table, which was pretty awesome! 
I have some other incredible moments to report to you, my fellow walkers, and supporters of our fundraising mission…as of today, we have raised a whopping $21,381.62.  Incredible! WOW!
Next up….D’s incredibly cool, customizable shirts WON for BEST FRIENDS & FAMILY TEAM SHIRTS! YAY D (that’s the pic from the moment we heard the shirts won)!


The weather miraculously held-up (after some dicey weather forecasts), WE BEAT OUR GOAL, and my parents and siblings were all with us (except my nephew and sister-in-law Alysson who cheered us on and sent pics of my week and half old nephew in his Alecia’s Stem Cells gear).  We had walkers travel from California, Chicago, Philadelphia, New Jersey and a 7 hour bus ride from Penn State!  Friends I’ve known for 20+ years walked, new friends-of-friends I just met that day walked, and my office mates and their families walked!  We had 46 team members make it to walk day and I could not be prouder!
Walk Day is like a weird holiday for me.  Its a day full of hope, promise and an incredible amount of love!  It is a day near and dear to me.  I can’t thank you all for your amazing generosity and supporting the ongoing efforts of JDRF. 

And just remember, if they don’t cure diabetes by next year, we would LOVE to have you join us in our NYC bridge crossing!