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.

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: http://wi.st/1QpMu08
event registration page: http://bit.ly/PatientVoice
And click HERE for more general information on The Betes.

An Addition

Did you read the OUCH post?  Did you know its National Volunteer MONTH (not just week)?

  • It does sadden me a bit to hear JDRF LA is looking for volunteers to help at their Gala (I would think they would inundated with volunteers but then again, I am a dreamer) . I’ve worked at this event twice but won’t be in town for this year’s event.  Trust me, its definitely a do good, feel good experience, highly inspirational plus lots of celebrity sightings and cute puppies (who doesn’t like cute puppies?).  Info: Calling all volunteers!! We need your help at the Imagine Gala on May 3rd. For more information on times, location and roles click the following link. Send your completed form by email to spietrzak@jdrf.org or fax to 213-622-6276
  • Sara over at Moments of Wonderful is the Las Vegas JDRF Chapter’s Volunteer Manager and they also happen to be looking for volunteers!  You can contact her at: jdrfnvvolunteer@gmail.com
  • The Diabetes Scholars Foundation has a whole list of scholarships available to incoming freshman to a four year accredited college, university, technical or trade school.  Look at these scholarships and its only one application to apply to a multitude of scholarships!  Check this OUT!