Category Archives: JDRF

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

 

Guest Post – Sara at The Voices Council

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Today I have a something/someone special to share.  It’s a guest post from my friend Sara who was one of the first people I met and felt I could really talk to when I made the switch from MDI to an insulin pump in 2000 (we also happened to have the same doctors).  I can’t possibly explain how fortunate I felt to have her as a friend then and all these years later, for her friendship now (hey, when she got her Dexcom she was willing to to bedazzle it).  Sara’s friendship has been a true resource for me and made me realize how important it is to have peer support.  She moved to AZ many years ago, but I usually get to see her twice a year when she’s in NYC on work trips.  She is a friend I probably never would have met if it weren’t for T1D.  So yes diabetes, I will give you 1 point for that one.  Here’s her post  (Also that is a pic of us below, post pumpkin pancakes.  Clearly pumpkin pancakes are exhausting hence the squinty eyes):

 

Annual/Bi-annual NYC brunch (pumpkin pancakes)
Hi, my name is Sara and I have had type 1 diabetes since I was a little kid and for the last 39 years, 3 months, 16 days and….6 hours,  I have been waiting….eagerly, sometimes not so patiently, but always hopefully, for my cure. For the day when I can travel without getting groped by the TSA, and when I can eat, without doing MATH.   For the day I stop poking holes in my body and I stop worrying about needing dialysis or going blind or wondering if my brothers kids will get this cruddy disease.

 

I had the honor of being selected to participate in the first JDRF T1D Voices Council. These 16 people are meant to reflect the needs of people with type one diabetes.  Most of the Council members have T1D, but there are a couple of family members. Most of us are normal people, but some are medical professionals. We are mostly American, but we have some Europeans who bring their unique perspective to the group. We range in age from a college freshman to a grandparent, but what links us is our commitment to finding a cure for Type One diabetes, and our vested interest in JDRF.  We are all active with our local chapters, whether as participants in the Annual Walk, and some of us are on our local Board of Directors. We don’t make any funding decisions; we are simply here to speak as the voice of our peers, to make sure our concerns (and I mean the universal “our,” not just our 16 voices) are being addressed, and to offer some perspective from the front, as it were.  We have been assured that our opinions are highly valued by the organization, including CEO Jeffrey Brewer and the International Board of Directors.

 

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Our first meeting was held last December in conjunction with the research meeting. We all met for the first time in person (we had set up a Facebook page and were stalking each other madly), along with with our leaders, Bill Parsons, from the International Board of Directors and father of a T1D son, and Dr. Richard Insel, JDRF’s chief scientific officer.  Our discussion focus was “complications”and specifically, which complications, if any, should JDRF be concerned with in terms of research.  As you can imagine, our opinions were fiercely personal; colored by our experiences. For me, the focus should be on eyes, absolutely. Others were more concerned with nighttime lows (the parents in the group seemed to speak loudest on this, less of a concern for me, thanks to my CGM), but we discussed and ranked them. The discussion at times was heated, to say the least, and a couple of us were unable to “rank” which complications were more deserving of funding than others.  By the end, however, I think our consensus was that we wanted JDRF to stay focused on a cure and improving our lives, and leave the research on complications to other organizations.  One complication the T1D VC discussed, which wasn’t on the original list, were the psychological aspects of living with this disease, which I think came as a bit of a surprise to the powers that be.

 

Two weeks ago, the T1DVC attended the annual conference in Washington DC, and we were forewarned that our topic was going to be the Psycho-Social aspects of T1D, which arose partially from a recent study on these issues, and our timely discussion back in December. However, let me start by saying for the first time in 39-odd years, I finally really felt some HOPE….sure, we all say we are full of HOPE every year when we try to raise money for the Walk…my donors need to hear that I haven’t given up on JDRF. Frankly, that “just around the corner” nonsense has been playing rather thin.  But now, oh, NOW!  I am so full of ever-lovin’, say Hallelujah, pass the hat HOPE, I can’t stop bouncing, dare I admit to smiling, (and then crying) every time I talk about it.

 

Little Sara

Little Sara

Not much has changed since the research meeting in terms of what JDRF is pushing through the pipeline (as they like to phrase it), but what HAS changed is the marketing and presentation of this research. For eons, I have had issue with the way JDRF marketed us! I was just sick of the ads full of cute children surrounding Mary Tyler Moore, as she begged for a cure. Don’t get me wrong, I LOVE Mary Tyler Moore, but she is not of this generation, and while Nick Jonas and Halle Berry ARE, we can’t seem to get them to speak out as loudly as, say Christina Applegate and Sheryl Crow do for breast cancer.

 

Anyway, enough whiny rant. The point is, if you haven’t seen the new marketing campaign,  stop reading now and go watch the BELIEVE video (which got a standing ovation and reduced me to tears) and the VISION video (which also got thunderous applause and reduced me to tears), and then watch the research videos on Encapsulated Beta Cells and the Artificial Pancreas Project and Smart Insulin and the WALK video or watch the Plan for the Future one. If you aren’t moved by these, then you probably aren’t really T1D!

 

So then we had our T1DVC discussion on the psycho-social aspects of diabetes, and we each defined our vision of a “cure.” Some of us are pretty strict and a cure means, “life as it was BEFORE diabetes,” while others are a little more lenient, and would accept a STEP towards a cure, such as encapsulated beta cells, or even an artifical pancreas system that integrated insulin, symlin AND glucagon. Most of agreed we didn’t want to trade T1D for anti rejection drugs and a pancreas transplant.

 

What I am MOST excited about is those Encapsulated Beta Cells.   I won’t go into all the technology behind it cuz you can google Viacyte and read one company’s plan for yourself, but I SAW it. Jeffrey Brewer stood up there and held up a prototype of this amazing device in his hand. It looks like a tea bag, but this packet will allow us to live completely boring lives, for up to 24 months…which, as Jeff said, isn’t exactly a CURE, but it IS a darn good thing. And it will be in clinical trials next year!

 

And don’t you think, for one SECOND, that just because they are working on all these technological advances, they’ve forgotten about a CURE.  The Voices Council cornered Dr. Insel at breakfast and grilled him on research updates that our own doctors don’t know about. His eyes gleamed as he talked about the things that are coming down the pike…the potential for a vaccine, and regenerating damaged beta cells, and gene therapy. It is all THERE….and we just can’t lose hope!

 

And basically, it’s that hope that gets us out of bed every morning. It’s why we ask our friends and families to donate to the walk, isn’t it?  We all still hope for our cure and we need JDRF to continue this research until we have a world without Type One Diabetes.  JDRF is now making it clear that they are no longer a mom and pop organization, but a world leader committed to removing T1D from this earth and until then, it is their mission  to lessen our burden, lessen our struggle, lessen our pain and fear, and lessen that of our loved ones.

And they won’t stop,  until they turn Type One into Type None

So, now go sign up to be a part of Alecia’s Stem Cells, or come be part of my Team Type None in Tucson, and let’s NOT give up our hope!

Sara (LINK TO MY VIDEO)

meandaliens

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.

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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.

 

Kicking It in NYC

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ASC sign1Let’s face it, I’m really not sure there will be a cure for Type 1 Diabetes in my lifetime.  I do know though, I will absolutely be part of finding the cure for Type 1 Diabetes.  This dream, idea, vision of mine has grown with intensity as I’ve gotten older.  I’ve been a T1D for 34 years.  That’s a long time.

I became involved with JDRF, because of my parents.  JDRF was their calm in the storm after I was diagnosed in 1979.  JDRF was still in its infancy at the time, but now stands the largest charitable supporter of T1D research.  JDRF and the families my parents met, managed to give my family HOPE.  My parents passed this HOPE along to me.  At 6 years old, my parents showed me what it’s like to pour your self into a cause and to BELIEVE. (check out my Mom’s 4-letter word)

In 2001, I founded Alecia’s Stem Cells in New York City with a tremendous amount of help from my friends.  A lot of things have changed in my diabetes world since that time.  One thing that hasn’t changed though is that our team is still based on friends and family who are willing to sacrifice their time and money (and often lend their creativity). They too will BE part of the Cure.

asc dodgeAlecia’s Stem Cells has had teams walk in Queens, Manhattan/Brooklyn, Boston and Los Angeles.  Our team has raised OVER $200,000 towards JDRF’s mission to cure diabetes by funding crucial research!  This is incredible and this is because of YOU!  YOU too are part of the CURE.

 

This past November, I was asked to speak along with Michael Strahan at a JDRF NYC Fundraiser.  It was a fun event but most importantly, it gave me a chance to share my view.  I got to tell parents of T1D kids about my story.  How I’ve been diabetic for 34 years, about how I DO understand how they may be angry that there isn’t a cure yet, but how I am proof positive of how technology has changed and is advancing diabetes care and treatments.  I told them how I envy their children. I told them that the glucose monitors and insulin pumps I use along with their children simply didn’t exist when I was their child’s age.  I told how to check my glucose levels,I would pee in a cup and add some chemicals and that gave a glucose “range”.  THAT range that was flawed.  I showed off my Continuous Glucose monitor that I wore on my arm.  I explained how these technologies are not a cure BUT they are advances.  They are advances that come from critical research. Research is the key component of JDRF.

This June, I was honored to be voted to the Board of JDRF NYC.  At the same time, I also became the Coordinator of JDRF’s Adult Type 1 Group.  Both of these opportunities will hopefully enable me to take another step in my NEED to make a difference.  Government advocacy and peer-to-peer support?  Yes, sign me up.  There’s a third part to this news though.  I consider it my diabetes TRIFECTA.  I’ve started the process to participate in diabetes clinical trials.  Maybe Alecia’s Stem Cells should be Alecia’s Lab Rats?

So one last thought, I’m 40 years old now.  I think about how someday I won’t be here anymore, but hey, none of us will.  I wonder what my legacy will be.  I hope that my nephew and soon to be either niece or nephew live healthy and happy lives and have families of their own.  Maybe they will mention me as their creative aunt.  I HOPE they remember that I always followed my heart.  I REALLY HOPE they never have to worry about T1D in their own children.  I HOPE that someday they talk about how their aunt had a friend who told her one time that there are two types of people… victims, and ass-kickers and their Aunt Alecia was an ass-kicker and yes, she helped cure diabetes.

I am not willing to sit back and wait for change.  I will be part of it.  Be part of it with me. Grab your sneakers and walk with me.  Walk for the other 3 million people in the US who are also fighting T1D.  Walk for hope. WALK FOR MY HOPE.  Support our team. CHEER US ON!

You can join and/or support Alecia’s Stem Cells at: http://www2.jdrf.org/goto/AleciasStemCells

Xo,

Alecia the Ass-kicker

WALK 2012 - Brooklyn 1/2 way mark

Memories AKA My BIG Announcement – Wednesday 5/15

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I am writing these #DBlogWeek entries out of order (shocking, I know) and managed to completely miss yesterday (Tuesday’s) post.  I’ll get to it.

If you’re interested in learning more about Diabetes Blog Week, go here.  If you are interested on reading other diabetes blogger’s entries on the topic below, check THIS OUT (believe me, this will introduce you to some really great people in the #DOC and keep you very busy).

Today we’re going to share our most memorable diabetes day. You can take this anywhere…. you or your loved one’s diagnosis, a bad low, a bad high, a big success, any day that you’d like to share. (Thanks to Jasmine of Silver-Lined for this topic suggestion.)

I’ve been mulling this question over for days.  I tend to be a look-at-the-bright-side-of-life thinker.  I thought about some of my BIG diabetes moments and how I simply don’t remember them and what a good thing THAT is.  Like when I was a little girl and had a severe hypo (unconscious and seizing) in my parent’s bathroom.  Glucagon given, the ambulance didn’t show up in time, a local police lieutenant friend of my Dad’s arrived and transported me to the hospital, sirens blazing, while I practically cut my Dad’s index finger to the bone.  My jaw had locked on my Dad’s finger as he was trying to keep me from choking to death.  Nah, that’s not the kind of stuff that defines my life.  That’s not my memory anyway.  It is a horrific memory for my parents.

The guy who almost lost a finger:

Reading is fun

What about the time in 5th grade when a school assembly was changed?  Being on Regular insulin as short acting insulin didn’t encourage schedule flexibility (but at the time, that’s as far as technology had gone).  I played the violin (terribly I might add) and orchestra practice was also changed because of the assembly change and well, you can see where this is going.  My morning snack was thrown off, I don’t recall lunch, and apparently in one of my classes, I stood up, declared I loved one of my classmates, and dropped to the floor.  My teacher tried shoving juice and food down my throat, although I was unconscious.  THAT was a bad idea.  I don’t remember any of this.  I remember the assembly and waking up the next day in the hospital and puking like crazy.  To this day, I have no idea who I declared I loved in my 5th grade class.  My Dad must have scared the sh-t out of my classmates too because no one ever told me, they never brought up what had happened, and they sent me cards.  Nope, this is not my diabetes memory, this is just a sad and scary blur.

I want this to be a good memory blog post.  A REALLY good memory.  My memory is from YESTERDAY.  Yep, less than 24 hours ago.  I hadn’t planned to mention this until everything was finalized but let’s face it, THIS keeps drowning out all my other diabetes success and failure stories in my own mind.  If you know me or have ever read my blog or seen my tweets, you know how diligently I have worked over the years with JDRF.  I am incredibly proud of my JDRF Friends and Family Team, Alecia’s Stem Cells.  I am amazed by all the places we’ve walked (NYC, Boston, LA).  I am in awe of all the people who tirelessly support our team and me.  I am grateful to my parent’s for getting involved in JDRF when I was diagnosed in 1979.

I was fortunate to attend a JDRF Research Update last month presented by the president of JDRF, Jeffrey Brewer.  I loved hearing about where the money is going, the technologies and research.  I found it energizing.  The timing couldn’t have been better as a month prior, it had been mentioned to me that I was a possible candidate for my local JDRF branch’s BOARD.  Say what?!

Jeffrey said something that has been swirling around in my head for weeks (well actually he said a lot of somethings like when he spoke about micro occlusions in pump sites that go undetected by the pump which makes PERFECT sense to me).  He talked about how the next generation of insulin pumps combined with CGM technologies are available in EVERY OTHER FIRST WORLD COUNTRY BUT OURS (oh yeah, I live in the US).  He also spoke a bit about the FDA, lobbyist, and JDRF’s involvement.  In my mind, these are the things I want to be involved in.  As much as I truly enjoy my roll as a diabetes mentor and spreading diabetes education, I believe there is a next step for me.  I want to be part of the change I wish to see in the world.

So yesterday I had lunch with the head of the nominating committee at my local JDRF.  We had a lot in common and I didn’t hold back my opinions on my local chapter’s direction and off the cuff ideas for increasing involvement and community awareness.  I am, by nature, a do-er.  I am a planner.  I love having goals.  I’m also pretty nerdy and creative.

This morning I received all the forms I need to fill-out and the invitation to the meeting where my new role as a Board member will be announced in June.  I cried when I called my parents yesterday to tell them.  There have been a few instances in my life where I truly felt I had a calling to do something.  This happens to be one of those moments in my life and it happens to be my diabetes memory.

 

We Walked Some More…

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Dodger StadiumI’m a bit late on this post but it’s been one hell of a Diabetes Awareness Month for this lady!  This post is the follow-up from my JDRF New York City Walk for a Cure post.  Our team, Alecia’s Stem Cells, expanded again this year.  On November 11th, I walked with our first EVER Alecia’s Stem Cells Los Angeles team at Dodgers Stadium (and the crowd goes wild….. Rrrraaahhhh).  It was wonderful to have a 2nd team again this year filled with friends and family. I was amazed by the team spirit exemplified by my cousin, his wife (my wonderful friend), her sister, and her sister’s boyfriend.  They sent walk donation letters out as a group.  When I received one, of course, I cried.  Their letter talked about me and used parts of my own NYC letter, but then it included a story about the beloved uncle of my cousin-in-law and her sister, who had died of complications of diabetes.

Our little newbie team managed to beat our LA team goal and raised $2,210.  I was, and remain, amazed.  Our NYC team had just raised $21,631.62 and I was 100% sure I had asked anyone and everyone to donate already by the time the LA Walk was on the horizon. If you doubt the power of social media, I offer you this, friends posted a zillion NYC walk team photos on Facebook right away.  It was an incredibly exciting day for me and I think that comes across in the photos posted.  As the LA Walk approached, I posted something about how great Walking in NYC was and if anyone felt they missed out, there was still time to help out our LA walk team.  Within minutes, two Facebook friends I barely know donated!  Right before I left for LA, I posted that we were $50 away from our team goal.  3 people who had already donated to the NYC walk all donated AGAIN to help us reach our goal.  I’m teary just typing this!  AMAZING (not the teary part, since I’m a crier, but how many people cheered us on and supported our team’s efforts).

LA Walk Day was incredible.  Gorgeous weather, a new venue and fun stories.  The walk route circles Dodger Stadium twice (but different paths both times) and THEN, the last lap is around the infield!  There were tons of diabetes vendors to visit and lots of swag.  I got samples of LEVEL Glucose Gel (the mandarin was super duper sweet tasting but very effective as I learned on the last lap when Dexcom beeped bg 87 and an arrow down) and Quick Sticks (which are freaking awesome – said me, the girl who’s never had a pixie stick ever).  I also got chatty with an Animas rep and begged for the Vibe (oh I know, I know, it hasn’t been submitted to the FDA yet, but a girl can dream and ask the same question over and over, and yes, over).

About 8 years ago, I went to some sort of JDRF NY luncheon.  It may have been a walk kick-off lunch but I’m really not sure.  I sat next to the only other person who seemed my age at the table, and she was a fellow T1D.  We became friends and she walked many moons ago with Alecia’s Stem Cells NYC.  At least 6+ years ago she moved back to Los Angeles, got married and had two kids.  All these years we’ve stayed in touch via Facebook and right before the LA walked she signed up for our team along with her family.  It was so great to reconnect with an old D friend and meet her adorable family.

The Set-Up & Reconnecting with an old friend

I also tweeted asking if anyone in the DOC was going to the LA Walk.  Although our team did the Big Blue Test, I never managed to meet-up with Mike Lawson (boo hoo) BUT, Diane from Type 1 Trip said they had a team and described their Team Julia shirts.  I found them in the infield.  I’m fairly certain I may have come across as a stalker, but I asked a ton of people in pink shirts who Diane was and although we were both busy with our teams, we had a few minutes to chat and I believe that was the first time I introduced myself as “Alecia, ummm Surfacefine on twitter”.  We had a big hug moment and my team was off and running (well walking).

Fighting Diabetes

As I’ve posted before and will say here again, 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 my friends, family and fellow walkers enough for their amazing generosity and supporting the ongoing efforts of JDRF.

 

 

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!

Are you free?

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Below is the email I finally finished (I usually have this letter ready to go in June so I am terribly behind this year) to get my friends and family to sign-up for the 2 walks I will be participating in on behalf of JDRF.  I’ve organized/led Alecia’s Stem Cells since 2001.  We have walked every year, rain or shine, since then in NYC, across the magnificent Brooklyn Bridge. In order to keep people involved and interested, I have made it my mission to constantly change things up.

I did 2 walks in two cities in 24 hours 2 years ago (Boston & NYC). I’ve hosted give-aways, walk kick-off parties and post walk parties.  I’ve worn pirate props along with 30 of my friends while walking 3 miles.  I’ve made videos.  I’ve sat in the dark at Battery Park waiting to do TV interviews at 5:30am about why I walk.  If you haven’t guessed it, this is an event near and dear to my heart and this year I will have the largest turn-out of my immediate family we have ever had.  My parents, both brothers and their wives, my sister and hopefully my new niece or nephew are all registered to walk with me.

I’m posting this note to invite you, the DOC, to come join me.  Its a great day for a great cause and I would be thrilled to have us walk together!

As you may know (OK seriously, who doesn’t know?), I have lived with type 1 diabetes (T1D) since I was 6 years old. I have managed to stay alive thanks to insulin but insulin is far from a cure. I am committed to JDRF, the leading global organization focused on T1D research.  JDRF raises funds that power the global movement to cure, treat and prevent type 1 diabetes (T1D).  The goal of JDRF is to improve the lives of every person affected by T1D by accelerating progress on the most promising opportunities for curing, better treating and preventing T1D.

In the past year, I’ve embraced some new technologies and have become further involved in diabetes advocacy.  I suspected I was having inconsistent low blood sugars in my sleep. I was not experiencing the symptoms of low blood sugar until I was already in the “danger zone” (hypoglycemic unawareness) which terrified me since there are too many of stories of people who hit that “danger level” and simply never wake up.  I now wear another device along with my insulin pump.  It’s called a Dexcom sensor and is inserted into my tummy or my arm (I prefer the arm since my insulin pump is on my stomach).  The Dexcom sensor gives continuous blood glucose readings to a receiver which is always with me and helps me make smaller and faster changes on my insulin pump.  The cool part about the Dexcom is that it gives me trends with my glucose levels although I still have to check my blood with fingersticks throughout the day.  Most importantly though, an alarm sounds if my blood gets too low (and I feel so MUCH safer at night).

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I also completed training to become a JDRF mentor.  The experience was eye-opening especially about issues currently facing many diabetics and their families.  Listening to stories of bullying and depression that often walk hand-in-hand with any chronic and degenerative disease was heartbreaking.  After a truly horrific experience involving an insulin pump emergency on an airplane, I realized that MY story and experiences with managing this disease could help other people, especially parents of diabetic children. Through a series of coincidences or simply fate, I started writing and advocating in the process of trying to give back.  I realized I was getting something out of this too… encouragement not only from my fellow diabetics but from other people who heard and read my story.  I had no idea how much that encouragement would relieve my own sense of stress (and that I’d learn some new diabetes tips in the process).

Amazing advancements are happening all around us and to keep this momentum alive, I am asking you to walk with me!

This year’s Walk takes place in New York City on September 30, 2012, AND we will also be walking in Los Angeles on November 11, 2012.  I’m writing to ask for your support. Now more than ever, you can make a real difference in my life and the lives of all people with type 1 diabetes. Please either join my team, Alecia’s Stem Cells, as a walker, fundraiser or support me with a donation. It’s simple, fast and fun AND we will of course go out and watch football afterward!  Please visit my personal page to get started.

NYC:  ALECIA’S STEM CELLS NYC

LA:  ALECIA’S STEM CELLS LA

Thank you for your support!

xo Alecia

 

My Mom’s 4-Letter Word

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I’ve been active in JDRF (especially the JDRF Walk-For-A-Cure events) for much of my life.  I have two  Alecia’s Stem Cells teams walking this year (New York City on September 30th and Los Angeles on November 11).  Every year, I write a letter, asking (sometimes begging) my friends and family to participate.  There are years where writing the letter comes easily, while other years I agonize over it.  I try to have the letter ready to go on my diaversary (June 19th) but this year I did a diaversary blog post instead.  So yes, I’m a little behind my own schedule.  It got me thinking though, why JDRF?  I have recently shared my D-blog with my family and decided to ask my Mom, about why my parents got involved specifically in JDRF. Although I was a bossy 6 year old when I was diagnosed, I  wasn’t calling the shots (Get it? Diabetes pun? Shots? Ha) so here’s my Mom, filling in the blanks:

Seriously? My Mom is gorgeous, inside and out.    This was me pre- D.

 

When asked why did we get involved in JDRF?  The answer came easily.

Alecia, our firstborn child was diagnosed with diabetes at the age of six.  That day, June 19, was a shockingly sad time in our lives.  To say we were blindsided, is exactly how we felt.  This was a child who was the picture of health, extremely bright, adorable, always cheerful and up for anything.  Everything we had ever heard about this disease came running through our minds and we were devastated.  Fear of the unknown was stifling!

Our endocrinologist, Dr. Robert Kaye, was most encouraging.  He gave us the best advice which became our mantra – “Alecia is a child, who happens to have diabetes, not a diabetic who is a child.”  That was the beginning of our journey, becoming immersed in the education of the vast world of living with diabetes.  Dr. Kay suggested we become acquainted with JDRF.  Through our association with them, we quickly realized we were not alone.  JDRF became our lifeline to meet others with small children, to learn from those families who had been down this road and most importantly, we learned fact from fiction about this disease.

We attended lectures, participated in telethons, had Alecia appear in public service announcements and I became a member of JDRF’s board – ultimately running the Philadelphia Zoo walk.  We were always hoping with the funds raised through JDRF that a cure was in the wings to be realized by our precious little girl and all the others afflicted with this life altering disease.

As years passed our daughter grew up, and we did everything possible to ensure her a normal life, participating in various activities like other kids her age.  After college, she moved to NYC and became involved in the NYC Chapter of JDRF and has cultivated a team each year for the annual walk in which her family and friends all participate.  The involvement with JDRF has shifted to her as an adult.

Our memories of working along side Lee Ducat and her leadership of an all embracing foundation (JDF) now JDRF, still remain a source of inspiration. Lee fostered a community to welcome, educate, and most importantly diminish the fear factor for families.  JDRF introduced us to other families who shared the same ultimate goal to help our kid’s lives be relatively normal until the day they discover the four letter word – CURE.