Last week we told you about the College Diabetes Network, aimed at helping young people best survive the college years with diabetes.
Today we'd like to introduce a related program initiated by Heather Gabel, a rising star in the diabetes advocacy world. She's a type 1 who was diagnosed at age 11 back in 2001. A fellow D-blogger who writes at Unexpected Blues, Heather lives in the San Francisco Bay Area and -- get this -- has a 1-year-old pug named Lancet... Yes, Lancet the Pug! How awesome is that?!
Holding a degree in East Asian religion and philosophy with an emphasis in cross-cultural coping mechanisms, Heather hopes to eventually head to grad school to pursue a career in the health physiology field. In the meantime, she's working as administrative and programs assistant for the Diabetes Hands Foundation and also working with PWD Dr. Korey Hood at UCSF on the psychosocial aspects of diabetes.
But what makes Heather stand out as a candidate for our ongoing Amazing Advocates series is the emerging diabetes empowerment organization she initiated on her college campus at the University of California in Berkeley called Beta Connect -- providing a new slant on mentoring for kids and teens within hospitals and healthcare centers. She's working on establishing this new group as a 501(c)3 non-profit.
As Heather describes it:
Developed with a philosophy that emphasizes an approach to diabetes as a relationship or teammate, Beta Connect aims to improve the lives of youth faced with the challenges and struggles of life with diabetes by helping them understand their personal diabetes story and dynamic relationship to it.
The two key Beta Connect programs Heather's kicked off within less than a year Insulliance and ConnectT1D, both focused on providing youth with diabetes access to the social support needed to best manage and cope with a type 1 life.
An Idea 'Actualized'
Heather says the idea dates back to her early years after being diagnosed, and how alone she felt (like so many of us did, before finding the D-Community).
"I went years feeling like no one could understand what I went through on a daily basis, and struggled so much because I didn't know where to look for the kind of emotional support that only someone who shares your story can provide," she said. "I was stuck in this place where I felt like I couldn't help myself."
When she left for college, she found the TuDiabetes community and her "curiosity spiked higher" because she found other PWDs who were meeting online everyday to talk about the ups and downs of life with diabetes. She then found the blogosphere... and she started to question why so many of us had the same kinds of stories about feeling alone and misunderstood -- especially during those youth years. During her senior year of college in 2011, she took a course that helped her to "actualize" a vision project and led to the concept of Beta Connect.
That was a "sit in a circle and talk about your feelings" type of class, Heather says. But it was transformational for her in thinking about her own diabetes. She started looking at how language is used in thinking and talking about diabetes, such as using "good" and "bad" in describing blood sugars and how medical professionals and organizations like the ADA focus on negative complications and scare tactics when talking about diabetes.
"I've always talked about diabetes as being a struggle and battle, and so I started transitioning my language," she said. "Not changing habits, just how I think about being at odds with my diabetes. Before that class, I had an A1C of 10.3 and I dropped into the 7s by the end of that, thanks to all the inner work and just being more conscious of checking my sugars."
From there, the idea of Beta Connect began to take shape.
"What if I could find a way to change the circumstances for others who were struggling during adolescence?" Heather thought. "What if I could use my past struggles to do good? What if I could help transform the shared story to a more positive one?"
Inspired by the mission statement of D-Camp Bearskin Meadows, run by the Diabetic Youth Foundation in California, Beta Connect started out as a student group in 2012. It uses positive coping strategies in mentoring -- replacing the word "test" with "check" and ousting the emotional reactions to high or low numbers, for example. Heather teamed up with another PWD named Sarah Afzal, who is now president of Beta Connect and helped her bring the first two programs to reality.
"Sarah had that same drive and wanted to impact the lives of youth with diabetes," Heather says. "With her talent and overall awesomeness, this finally came together in March."
From Student Group to Emerging Non-Profit
Both programs are designed as templates that can be put in place at any hospital, health care facility, JDRF chapter or College Diabetes Network chapter anywhere. While both are expected to grow larger this fall, Heather says each group is connecting several dozen people for now.
- Insulliance is a HIPAA-compliant program designed for hospitals and healthcare centers, connecting young adult PWDs in college or recent college grads with those youth who are newly-diagnosed or struggling to manage their diabetes. The first Insulliance program launched in March at the Children's Hospital Oakland (California). The volunteer PWD mentors provide emotional support and helpful information that may impact a mentee's diabetes management, using self-empowerment and by showing them that diabetes hardships are shared. There are 12 volunteer mentors participating in the first hospital location, and they're handling three or four meetings per week. These student volunteers can do homework at the hospital if needed, while waiting for a patient to call on them for a mentor visit.
- As Heather sees it, Insulliance carries the potential to "transform the current model of pediatric diabetic treatment" using the "shared patient story" as a mechanism for peer-to-peer support in clinical settings. Within the next year, Heather hopes the Insulliance program can be implemented at Lucile Packard Children's Hospital at Stanford University, and the goal from there will be to create one new Insulliance program per year for the next four years.
- ConnecT1D is a mentorship program for kids and teens between 8 and 17, designed to open dialogue and create partnerships that have the capacity to build and strengthen the diabetes community as a whole. ConnecT1D is designed for community groups, such as JDRF chapters, College Diabetes Network chapters and others. The first such program launched in June has the JDRF Bay Area chapter is partnered up with Beta Connect, with 13 mentors participating as of now (some are the same PWDs who are mentoring as part of Insulliance, too). They're hoping to reach out to Orange County and San Diego down the road, Heather says.
A focus right now is forming an advisory committee, Heather tells us. She's reaching out to members of the D-Community to be a part of Beta Connect, and she wants to hear from anyone who might be interested in helping out. You can reach her directly through Twitter or by email.
"Organically, I want to see it be able to grow as it needs to," Heather says. "I'm very interested in studying the effects of mentorship and the impact of positive language on diabetes care, and just what it does to make these connections with people who all share diabetes stories."
Pretty cool concept, Heather. It's great to see you working to fill this untapped need. As someone who's been living with type 1 since an early age, I know firsthand how much difference peer support and mentorship can make. Looking forward to seeing Beta Connect grow!