A look back at 2016: challenging personal times for Dana Ball lead to a renewed commitment to the type 1 community
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News and Updates from the T1D Exchange

Dana Ball:

An end of year perspective: My Own

Dear Friends,
 
As 2016 winds down, I’d like to share a personal story that has deeply impacted me and my life’s work.
 
As co-founder and executive director of the non-profit organization
T1D Exchange, I’ve spent 15 years dedicated to people living with type 1 diabetes (T1D), their families and the clinicians who care for them. I’ve worked alongside many friends and colleagues who live with type 1 diabetes or care for someone who does. During this time, I’ve worked to build innovative programs that seek to accelerate therapies and solutions that will tangibly improve T1D outcomes.
 
For these reasons, I thought I understood the overwhelming feeling of vulnerability one faces with the severity of a health diagnosis that results in constant daily management, worry and at times the inability to control one’s health outcomes.  I was so wrong. I’m incredibly humbled to admit that it wasn’t until my own health scare this past August that I really gleaned insight into what vulnerability feels like.
  
An Unexpected Diagnosis
Like many patient stories, it started when I realized I didn’t feel “right.”  I was tired, run down; I visited with my doctor.  Over the next several weeks I had a wide range of tests; ending with a procedure to see if all was well with my heart.  I remember being prepped for the procedure and thinking, “I’m sure it’s nothing too serious.” 
 
For the first time in my life, I had an unfamiliar fear for my health and the question: “What if.”  

What if I do have a problemWhat if – even worse…?   I remember at the start of the procedure thinking “I need to be ok, all is going to be ok”, but within 30 minutes I received a very different message, “We need to schedule you for open heart surgery to repair major blockages in your arteries – you need a quadruple bypass.”
 
No Time to be in Denial
I was shocked, angry, and in denial.  I only had a couple of days to make preparations for a 6-8 week recovery.  These preparations included serious discussions about my personal and professional life, and began for me an altogether new feeling of vulnerability.  I’ve always been a strong and independent person; suddenly I was afraid of having to rely heavily upon many other people to help me get through the procedure and recovery period.
 
Could I really count on the nurses, clinicians, therapists, close members of my own family, and even myself to survive?  I was worried.  I had so many questions: after the surgery, what happens if I can’t work?  Will I be the same and return to my normal life?  How much will this cost? Did I save enough money?  As I went through my own journey, I was reminded that this is what the community I serve must face every day, for the rest of their lives. I am further awed by the strength and resilience of people with T1D and their families even more now that my own health has made me feel vulnerable.
 
A Renewed Commitment
I feel fortunate to report to you, my friends, colleagues and community, that I have returned back to work to T1D Exchange with a renewed sense of purpose, and with greater awareness about vulnerability and mortality.  My experience was life-changing; not exactly the same as a diagnosis of T1D and its chronic implications, but still, very much alike in its moment of severity and vulnerability.  It has made me think deeper about the work we do and must continue to do to improve life with T1D.
 
I founded T1D Exchange because I believe that improving outcomes in T1D requires a new approach—one that helps researchers conduct better research faster. Better because it’s patient-driven and more informed.  Faster because T1D Exchange provides researchers with access to resources they need to conduct clinical studies that advance therapies designed to improve quality of life.  I now intimately understand why our work is so important and am excited to expand our work to accelerate therapies and find better solutions to improve care so that patients can take control and live more enriched lives with a lessened burden.  Now more than I ever I believe in our mission and work ahead.  Triumphing over vulnerability is not easy; but it is a communal effort, and we will continue to bring individuals and groups together to ease the burden of T1D.
 
We Need Your Help
I hope you will join us on our journey.
 
Your continued participation with T1D Exchange will help us continue to do our important work to ensure everyone affected by T1D has a healthy future.



Dana Ball
Co-founder and Executive Director
T1D Exchange

POLICY

T1D Exchange Joins Patient Groups' Health Care Letter to New Administration

T1D Exchange is pleased to partner with 72 organizations that advocate on behalf of people with chronic, serious, and life-threatening diseases such as type 1 diabetes (T1D) to educate the incoming administration and Congress on the unique health insurance needs of our community.

On December 14, 2016, we co-signed a letter to President-elect Trump and Congressional leadership explaining the critical role that high quality and affordable health insurance plays in helping our community access essential treatments and care, and expressing our desire to work together in creating a health care system that benefits all Americans.

Read the letter and see the list of the organizations that joined us in this effort. VIEW NOW

RESEARCH HIGHLIGHTS

Another year leading to key T1D insights


The past twelve months has provided tremendous momentum for T1D Exchange. Here are some hand-picked highlights: 

Some research highlights include: This year, we also partnered with the Leona M. and Harry B. Helmsley Charitable Trust and JDRF on a Health Policy Initiative; completed our first Diabetes Innovation Challenge; and announced a multi-million dollar automated insulin delivery (AID) investment initiative

PROJECT SLEEP
 

Get the A to Zzzzzzs of Sleep


Getting quality sleep with T1D is a big issue.

In fact, nighttime T1D care was identified in a T1D Exchange study as the ‘most challenging physical task’ in T1D management.

Want to get some insights from the T1D community and practical tips about sleeping with T1D? 

Check out our latest Did You Know on Project Sleep.
This is just a small list of the research we’ve published in 2016.  We couldn't have done it without you. Thank you for your continued input, interest and participation.

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