Monday, July 11, 2011

A Culture Shift

The third Roche Social Media Summit brought JDRF CEO Jeffrey Brewer to join us for a lunch-time discussion. His talk reinforced what I'd experienced a few months back during the JDRF Government Day in D.C. when meeting and hearing him speak for the first time: This guy "gets it" and he's doing what is needed to make this organization more inclusive and effective for all of us in this community.

From what I observed from many in the room is that they agreed, if the nodding heads and twitter-comments expressing approval were any indication.

Some highlights I took from Jeffrey's talk:
  • Name revision: from the Juvenile Diabetes Research Foundation to just the general acronym-centric JDRF. This isn't as drastic as it could be, but it represents a shift that keeps the four decade old foundation while simultaneously eliminating the word "Juvenile" in order to be more inclusive. Moving forward, there will be a new logo, new messaging, new tag line.
  • New motto: "Cure, Treat, and Prevent."
  • The cure is a long-term goal and we won't rest until we achieve that, but it's a marathon not a sprint.
  • JDRF was founded by parents, and in the past the group's mission has been focused on them and their needs only. That's been limiting. If JDRF is perceived to be only focused on children, it's missing a huge piece of the picture of those it's supposed to be helping. Represents the interests of all people living with this disease.
  • Adults represent 86% of the Type 1 diabetes community.
  • Most Adults With Diabetes don't believe we will reach a cure in their lifetimes, and Jeffrey says that's a shame but probably a reflection of some badly set expectations in the past. Prevention is a key in making sure that future generations don't have to live with diabetes as we do.
  • In past, the focus on a biological cure was a problem in reaching out to adults. People just wanted a cure so badly that they thought they could just rush in and raise money to get to that "a-ha moment."
  • The JDRF has an opportunity and responsibility to do a lot in the care and treatment arena, to really transform people's lives in how they Live With Diabetes short of that cure being realized.

Research is still a huge part, but it's so much more than just research - it's the pipeline of getting that research from the laboratory to the actual person who needs it. That means advocating with the FDA and creating more relationships in the business market to help connect all the dots so that better technology and a cure aren't just being pursued and developed, but people can actually get access to the technology and that cure in the end.

He said, "It comes from the fundamental principle that we're not successful until these things are available to people in their doctor's offices. It's not about when it happens in a mouse. It's not about when it happens in a limited number of people within a clinical trial. It's about when it's available, to everyone who needs it, in a doctor's office. That's success to us."

Overall, what struck me the most was Jeffrey's emphasis on a culture-shift within the JDRF. One that is national and trickling down to the local communities. One that is getting at a broader diabetes community.

A story that stood out to me during Jeffrey's talk was when he referenced an anecdote read on someone's dblog, about that person being at a walk and being asked by a volunteer: "So, do you have a child with diabetes?" There was an assumption that person was a parent of a child with diabetes. But the answer so many of us have given, at walks and other D-events and activities, was what Jeffrey heard that day, that the person being asked that question was an Adult With Diabetes who was there walking for him or herself.

"We have a bit of a culture shift to make as an organization, to make it more friend to all people living with diabetes," he said.

My views on the JDRF have been jaded in the past, based on my exposure to many of these "kid-themed" messages of the past. I've echoed what others have said in the D-Community: That as adults, we felt ignored and not represented. So, I stepped away from this organization years ago based on my experiences. But more recently, I'm very truly encouraged by this new direction. I feel represented. The JDRF is giving me hope, whether or not I believe we'll have a cure in my lifetime. Hope that tomorrow will be brighter and that we are actually moving toward that day when we will see a cure for Type 1 diabetes, and future generations won't face this chronic condition as we do now.

Yes, it may take time to see these beliefs and efforts trickle down completely to the local communities. That's where we come in. I do hope that other Adults With Diabetes give the JDRF a new chance. If something isn't happening, maybe that's a signal for us to get involved locally to be a part of that change. Because it's up to us, as a community. Together.

This is just the beginning, and I feel that we're moving forward.

Thanks, Jeffrey, for doing what you do and being who you are. And making a difference.

8 comments:

Sysy Morales said...

This is awesome news. Thanks for reporting on it! Hopefully you can convince others to give them another chance. They made the right decision, I mean, they can increase funding by a great amount by representing that 86% and that benefits EVERYONE. Their previous stance was emotionally based and while I completely understand, the point is the end goal of a cure and a better life for all people with type 1 and this all costs money and attention.

Holly said...

Great summary, thank you. I can see how you'd feel left out-it has always seemed kid-centric to me too. (even though my daughter is still young!) I've see kids (high schoolers here) "grow out" of fundraising, so there does need to be a shift. : )

Hallie said...

Great post! Thanks for the recap!

I definitely see the need to shift that focus. Because my little girl won't be little forever (no matter how I try to keep her small!). And she's going to need support then - if not more than now. Plus, I think the adults with D serve as wonderful role models and sourcs of support for both kids and parents. I am always encouraged reading about awesome PWD's and their lives. Not recognizing that is missing out in so much. I'm glad to see JDRF moving in this direction!!!

shannon said...

this was super informative, thanks so much for sharing it all!

Reyna said...

WOW...thank you for this. I was wondering about what they were going to do with the name and the mission statement after Mr. Brewer came on board.

Brenda F. Bell said...

I see more than an institutional-level culture shift needed. Research towards management and cure aside, I see many FFL'ers and online activists (including the still-token Type 2 and Type Other activists) forging a distinct "diabetes" culture. While it is not, nor is it likely to need to become, as culturally rich or as separate as Deaf culture, it still needs to embrace all ages of people with all types of diabetes and those family and friends who are interested in standing with us in the same manner as the with-hearing members of the Deaf community.

Ronnie Gregory said...

I will Echo what Brenda F Bell said. am all for focus and institutional culture shift but I think, the bigger question from that session was how this shift in culture was being used to try and work together with the other guys ADA, and IDF because essentially aren't we all just doing the same diabetes related things.

Un-Apologetic Diabetic said...

Wow, very interesting updates!

I am touched that they may make the name more inclusive of all type 1's, can't believe the adults make up 86%!

Thanks for sharing. :)