Stars Align in the Advocacy Sky

Martin and I met early last week. We spent a day on Capitol Hill meeting with various representative offices as part of Diabetes Patient Advocacy Coalition DPAC, addressing issues/legislation pertaining to diabetes.

Between meetings, we talked about the clinical trial I’ve been in and devices I’m using.
Martin has lived with T1D for 66 years which is by all accounts, especially Senator Markey’s office, quite amazing, especially considering how crude treatments were when he was diagnosed.

In one of our meetings, Martin spoke about having been one of the clinical trial participants of laser treatments for diabetic retinopathy in the 1970s (‘74). I felt a lump in my throat.

I spent many years feeling ashamed of my own diabetes complications (I didn’t do a “good enough” job). I was just starting my career in design, a visual field, in the wonder of New York City. The diagnosis was terrifying. A brilliant doctor gave me 2 treatment options. I chose a new technique involving very aggressive laser therapy. Many rounds and a few years later, my eyes stabilized.

Now, I get to give research updates and motivational talks for JDRF and I am asked to speak at medical schools about T1D. In this roll, I show photos of the inside of my eye. I explain the laser scars and how my eyes compensate. I encourage (beg) people to get involved in clinical trials, and how I do them for ONE specific reason. I do them to pay-it-forward. I say how I will never get to meet the people who tested retinopathy laser treatments. Some of the first participants went blind immediately. I NEVER say what I was once told, that I would never meet these “testers” because they had died already.

On Tuesday, I learned my talks will have to change a bit. Not only did I meet one of the trial participants whose actions have given me the gift of sight, but I finally got to say, “thank you”. I tried to explain this to New Friend Martin, but I couldn’t get the words out, so outside a Senator’s office, we stood there hugging and crying.

On World Diabetes Day and everyday, Martin, I thank you, again and again, I thank you. 

Bonding outside Elizabeth Warren’s office. Martin was the true star of my day.

40th Birthday Party

40 years ago, my parents were told to take me to the ER and get my blood taken. I was 6 yrs old. It took 2 nurses and a questionable doctor 3 tries to get a vein. They held me down, I cried. My Dad took me to McDonalds for pancakes (with syrup, ugh) afterwards. 

That afternoon, my parents were on the phone, my Dad walked out the front door and sat on a rock (yes we had a rock garden, weird) and for the first time ever, I saw my Dad put his head in his hands and cry. The next day, with my little suitcase and teddy bear, my parents took me to Hannehman Hospital in Philadelphia. I learned the word “diabetes” and that I would have to take shots. In my 6 year old brain I thought the shots were like the blood draw the previous day and doctors would hold me down. For two weeks, I went to arts and crafts, practiced giving injections to an orange and slept in a room full of children with various ailments. I remember the boy in the bed next to me, Raul, who had a heart condition. His Mom cried a lot. There was a girl across from me who had been severely burned in an accident. The thing that scared me the most though, was that I wouldn’t get to go to school. I was very eager to start 1st grade but now, something was wrong with me, I was sick and I thought I was going to be sent away. 

My parents and relatives visited me everyday. At night, my parents would call on the pay phone to say goodnight. My Dad would tell me I needed to be brave for the other kids. I would try not to cry, I would cover my face, begging my parents to please bring me home. 

Type 1 Diabetes treatments and research have elongated my life expectancy. Although there are a litany of items I hate about T1D, I believe some of the best parts of me are based on the idea that I live on borrowed time. 

Outliving peers who’ve been on the same path makes for some incredibly hard feelings. Testing technology that stands to improve people’s lives is awesome yet extremely troublesome when one looks at the lack of access so many of us face. Diabetes is a tricky disease with no easy cure… yet. 

I haven’t fooled myself into thinking riding a bike will cure T1D, but certainly funds raised from walking and riding has directly impacted the fact that I am here. The eyesight i need to ride is proof of the technological progress and amazing doctors, in my lifetime. 

I’m the co-coach of my JDRF ride team this year. You’d be hard pressed to find anyone (including me) who thinks I’m a “good” coach. I’m not the technical person. Not even close. I care most about safety and that people enjoy the ride (in that order, safety FIRST). And I as I begin what marks my diabetes’ 40th birthday, I plan to live (and celebrate) with just as much vigor, determination and wild ambition as I guess I’ve always had but it’s tempered these days with a growing sadness for the increasing number of people who aren’t here with me. 

My role in the diabetes space has evolved over time and I’ve worn a lot of hats, jerseys, and a hospital bracelet with my first name misspelled, but one thing has never changed, and that’s my belief that we can help make a difference. 

Thank you for cheering me, and all of those affected with T1D, onward.

38 is GREAT!


On June 19th I will have lived with Type One Diabetes for 19,988,640 minutes (38 years).  During that time, I have dealt with a lot of pricks (interpret that as you will… see photo on the link… cheeky, I know) but I can’t even tell you how many pricks because portable glucose testing didn’t even exist when I was diagnosed.  I have seen technologies and treatments progress throughout my lifetime and have remained healthy enough to participate in clinical trials of devices (hopefully) on the horizon.   

My outlook is and always has been, that I live on borrowed time.  This thought process has brought unmeasurable beauty into my life, daily, but also costs me dearly. Endless monitoring, adjusting, stress, expense, worry, the hoops I jump through trying to maintain balance, and the pain of watching the people who love me worrying about me.

So I am again training to ride 100 Miles to raise awareness and funding to obliterate Type 1 Diabetes, but I need YOUR help.  I have a ton of other things I want to do, create, design and experience..

Let’s create a better future for the 1.25 million people with T1D.  Let’s ensure that technological and medical break-thru’s continue. Let’s continue the advocacy work my parent’s instilled in me as a little girl, because this is my responsibility to make the most of my borrowed time.  Let’s get excited that beta cell encapsulation and smart insulins are currently in human trials.  Let’s help JDRF continue funding clinical and life saving research.  

I’m going to keep pedaling.  

With all my heart and broken pancreas, I thank you.  The route is hilly this year, and I may need a push. xo


Click here to give an online PUSH! 

Type 1-der Woman!

Next month I will pedal 100 miles in Amelia Island FL to help eradicate T1D. I can keep talking about the importance of better treatments, treatments like the Artificial Pancreas which I have helped test. I can tell you about the absolute necessity to advocate for Medicare to include CGM coverage. I can tell you about insurance companies removing the choice from T1Ds to choose their type of insulin pump (and why that’s wrong). I can give you a bevy of reasons to help in this crusade to fundraise and advocate, BUT I already have.

Last year, my bike “Piñata Bike” was brightly covered in the names of all my donors. When I didn’t finish in Burlington and kept training in secret for Tucson, THOSE names were my greatest motivation to never quit. Those names traveled with me across the country and were my focus on every ride, when I thought my legs would quit.
Thanks to some inspiration from JDRF UK and a very special little T1D who loves Wonder Woman, today I launch this year’s final fundraising push. …

You don’t have to pedal 100 miles, but you can be right there with me on my ride (no literally, my bike). All donors names will be back on the bike this year a la Wonder Woman cuff style (think glittery stars). Any donation $100 and above will get a special Wonder Woman gold sticker with their name.

Insulin pump tubing = Rope of Truth? You betcha!


Keeping the FUN in Fundraising!

Looking for Pirates in Pittsburgh

Quick note for the weekend:

Happen to be in Pittsburgh?  I am honored and so darn excited to attend and speak at JDRF Western PA’s Type One Nation Summit on Saturday August 27th. The schedule for the day is phenomenal (see link) and… is being held at the Pittsburgh Zoo and Aquarium!!! Lions and tigers and Polar bears, OH MY!

Pic “borrowed” from TripAdvisor and no they aren’t letting me speak from the shark tank….yet. Let’s learn about T1D AND go to the Zoo!

Thanks JDRF and Allegheny Health Network.

Diabetes Blog Week – LOVE

I started this blog/space, to connect and share within the diabetes community.  The switch from thinking about writing a blog to actually doing it (years ago), came from a prompt I read from Karen Graffeo at Bitter Sweet about participating in Diabetes Blog Week.  I don’t write many posts on this blog recently and I don’t spend as much time within the DOC as I once did, but that doesn’t delineate how much I value this sense of community, the connections I’ve made, and that this blog led me to expand my own role as an advocate.  The connections I have made with others has become a vital part of my own wellbeing both physically and mentally.  I have gathered knowledge and most importantly, I have made amazing friends through the diabetes online community (DOC) that are now part of my In Real Life (IRL) world and that is priceless to me.

Today is the first day of this year’s Blog Week and here is the topic:

Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)

I do not like the photo below.  My arm looks the diameter of my thigh (it is not, yet), the wrinkles in my face seem accentuated, and there appears to be a baby’s foot growing out of my wrist. I do not like this photo, but I do LOVE this photo.  This is friendship, admiration and joy.

karen and alecia hug

This is my friend Karen.  Karen was on my radar years ago because I read her comments in DOC twitter chats and I also read her blog.  She’s a fellow T1D, lives in the same city that I do and when I was trying to learn about T1D and pregnancy, she was someone who I knew had experience.

We met in real life through JDRF at a group event. Participants included DOC-ers from 3 JDRF chapters who decided to get together for dinner beforehand.  Karen freaked out during our initial conversation. She knew of me through the JDRF NYC Walk (walk team).  I freaked out too (just far less visibly and audibly) when I realized this was the woman whose blog I’d been reading and following around the internet.

We became friends.  My friendship with Karen came with “accessories”… her husband and now 2 kids (please note: “accessories” is sarcasm folks.  Her husband gave me a pep talk one time that I will always carry in my heart). They are all my friends and I love them dearly.  Diabetes brought us together, specifically the DOC, and as much as I hate diabetes, I love my friend.  LOVE.

We may talk about things far beyond diabetes, we may laugh so hard we can’t speak to each other, and my life is richer because this family is in it, but I am aware that I would probably not know them if it weren’t for diabetes, so why am I here… today, rushing to type this post?  After an incredibly frustrating and annoying high BG and a messy pump site change in my office’s bathroom, Karen popped into my mind and that we need to make plans soon.  I text her a much shorter version of what I wrote above and explained that as frustrated as I may be, that diabetes sucks and she doesn’t (that’s always a nice text message, “you don’t suck”).  Diabetes gave me my friend.  My hope being here today as part of Blog Week, is that it’s a reminder of just how vital and wonderful these DOC friendships are and all it takes is ONE connection (I have many in my squad so please, no one be offended because these friendships are my wellness team).

A few weeks ago I went on a bike ride, I text Karen who happened to be right near my destination and subsequently had a cheer squad yelling my name (imagine Smurf voices) as the kiddos ran to my bike.  It was just awesome and although I did some more formal diabetes advocacy this morning, my buddies are what I celebrate in this blog post today.

HOffmanderson cheer squad




Blinded Me With Science


IMG_9580Thomas Dolby wrote and sang a song called “She Blinded Me With Science” which was released in 1982.  I have always liked the song and am currently waiting at The Joslin Diabetes Center donating all sorts of parts of myself (a lot of blood in the photo above and DNA stuff) and having all sorts of tests for a clinical trial.  I am now waiting for the 2.5 hour eye exam (actually waiting for my eyes to dilate) and the Thomas Dolby’s hit is totally stuck in my head (ear worm) and making me smile like a lunatic banging away on my laptop.


Little known facts about the song (Thanks Wikipedia):

The song features interjections from the British scientist and TV presenter Magnus Pyke who repeatedly shouts “Science!” (thanks Google).  Thomas Dolby wrote the song because he had an idea for a music video and needed a song to go along with it.  There are a lot of interesting parallels here today.

One of the first lasers to treat diabetic retinopathy

One of the first lasers to treat diabetic retinopathy

The lyrics:

It’s poetry in motion
She turned her tender eyes to me
As deep as any ocean
As sweet as any harmony
Mmm – but she blinded me with science
She blinded me with science
And failed me in biology

When I’m dancing close to her
Blinding me with science – science
I can smell the chemicals

Mmm – but it’s poetry in motion
And when she turned her eyes to me
As deep as any ocean
As sweet as any harmony
Mmm – but she blinded me with science
She blinded me with science
And failed me in geometry

When she’s dancing next to me
Blinding me with science – science
I can hear machinery
‘Blinding me with science – science

It’s poetry in motion
And now she’s making love to me
The spheres are in commotion
The elements in harmony
She blinded me with science
She blinded me with science
And hit me with technology

‘Good heavens Miss Sakamoto – you’re beautiful
I don’t believe it
There she goes again
She’s tidied up and I can’t find anything
All my tubes and wires
And careful notes
And antiquated notions

But – it’s poetry in motion
And when she turned her tender eyes to me
As deep as any ocean
As sweet as any harmony
Mmm – but she blinded me with science
She blinded me with science
And failed me in geometry

She blinded me – with science
She blinded me with

For more information on clinical trials in the US I encourage you to visit

Lab Mouse Center

Lab Mouse Center

Bye Phife – A Funky Diabetic

“Now here’s a funky introduction of how nice I am.

Tell your mother, tell your father, send a telegram.

I’m like an energizer cause, you see, I last long.

My crew is never ever whack because we stand strong.”


Five years ago I attended a screening of Michael Rapaport’s documentary “Beats, Rhymes & Life: The Travels of A Tribe Called Quest”. Tribe had been one of my absolute favorite Hip Hop bands (still is).  I went to a TCQ show shortly after college when I moved to New York City.  Busta Rhymes made a guest appearance and I remember fondly how everyone went bananas-cuckoo-crazy when he jumped on stage.  It was at THAT very show where A Tribe Called Quest announced that they were breaking-up.  It was shocking.

Years later I learned Michael Rapaport (actor/director) was at the very same NYC show in 1998.  He was so fascinated by the break-up and was a super fan, that he decided to make a documentary or “rapumentary” about the group’s rise to fame and subsequent feuding and break-up.  I made it my mission to go to the opening screening of the movie at the Tribeca Film Festival.  I knew Phife Dawg (member of TCQ) was diabetic, person-with-diabetes, and had undergone a kidney transplant.  i was quite curious to see how he was doing.

What I didn’t know, and was surprised to find while viewing the movie, was the significant role diabetes played in the break-up and conflicts within the band.  Diagnosed in 1990, Phife made it clear in both the movie and in the Q&A with the audience, that he struggled with his diabetes diagnosis.  Phife had problems with hypoglycemia and hyperglycemia as the fame of the band grew.  He also addressed how fluctuations in glucose levels led to moodiness which also led to conflicts with his bandmates.  I sat in the theater next to my college roommate, as Phife spoke, we both cried.


Can I kick it?

Yes you can!

This morning, I read that Phife passed away.  I just saw a release from his family that he passed from complications of diabetes.  One of my brothers contacted me about whether Phife was T1D or T2D.  Over the years, I have seen reports of both.  All I know, is when I hear of a loss of life from diabetes, I am flooded with feelings and then ideas. Today, I think of my many happy memories listening to and seeing a Tribe Called Quest while in college, when I was a brand new New Yorker, and at a film screening.  I think of the massive influence TCQ had on so many of today’s musicians.  I think of all the times I giggled listening to the incredibly creative lyrics of Tribe songs.

“When’s the last time you heard a funky diabetic?”


Art and Helicopters

I was 13 minutes late for plans last evening (I just need a helicopter.  I live a few blocks from a helipad.  I would also like Inspector Gadget spring bounce shoes.  I would not use both at the same time though, jump out of the helicopter, turn on spring shoes, bounce back too far and be decapitated by helicopter blades. No bueno.)

13 minutes late and as I tripped, but did not fall, in the street I looked up and saw this:

insulin train

I haven’t seen a Appleton Pictures piece in a while, and my heart skipped a beat.

A fun evening and as I headed home, lo (I was not low at the time) and behold:

appleton chelsea

Like a diabetes Batman symbol.


Paths Crossing – The BETES

There’s this woman who’s path and mine continually cross, more than she actually knows. It involves a whole substory from Spiegeltent (love) in 2006 to ringing in the New Year at La Soiree in 2014 (both were cabaret/vaudeville shows in NYC).  It’s a bizarre story but this woman, Marina, and I keep crossing paths in T1D Land too.  We have friends in common, are sometimes at the same events but never have more than a few minutes to chat (I did get to see her in action once at a JDRF TypeOneNation Summit in Long Island and was intrigued).  I follow her on all sorts of social media platforms (clearly, I’m a stalker), and with all of that said, I am quite disappointed I will not be in NYC this coming weekend to see her work with The BETES Organization.  So instead of trying to describe this myself, Marina sent me some information (she is the Founder, Executive and Artistic Director of The BETES Organization), and I share it with you below:
Our work is about the lived experience of living with chronic illness- the mental health, the emotional well being, and the social. Our programming currently focuses on the Type 1 space.
Whatever your story is – coming to understand and express the rewards and hardships of living with a chronic condition, surrounded by community. The act of expression gives validity to our narratives, and strengthens all of our voices, simultaneously helping those who we are surrounded by better understand the patient experience, strengthening communication and building compassion.
What we add to the mix is the transformative power of puppetry- suddenly, all of this invisible stuff has form and shape, and we can all see it, talk to it, cry and laugh at it.  Its a powerfully unique creative tool.
Our honorary event co-chair is Dr. Henry Anhalt, DO of T1D Exchange
Our honorees are Dr. Jason Baker, M.D. of Marjorie’s Fund and Dr. Barbara Anderson, PhD.
The event will hold a 45 minute section of our creative, participatory programming followed by a heated discussion with a leading panel of clinicians, advocates and patients, and will be followed by an award ceremony for our two honorees.
This is in-between a wine reception with a top-notch live jazz trio.
Here are the details:
Event: The Patient Voice 2016: Bridging the #Diabetes Gaps
Date: Sunday March 20, 2016
time: 1:30 – 5:00 p.m.
Location: 417 e. 61st street, Manhattan
3 minute video:
event registration page:
And click HERE for more general information on The Betes.