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The Diabetes Advocates MasterLab Creates a Roadmap for Action at Friends for Life 2014

By Adam Brown

Twitter summary: What a packed #MasterLab at #FFL2014 this year – learning how to be a better #diabetes advocate from the experts

Short summary: We were lucky enough to participate in the first ever Diabetes Advocates MasterLab this year, where we heard from star speakers on how the FDA can be a partner in improving innovation and on how to make your voice heard. On that last point, we were told about two great first steps: take the Diabetes Advocacy Survey and follow the leaders.

The Children with Diabetes Friends for Life conference in Orlando is always one of our favorite events, where families can gather and discuss their experiences, learn from the most respected professionals in the field, and connect with others during a fun-filled week. This year, we attended MasterLab at Friends for Life, a first-of-its-kind, all-day workshop on diabetes advocacy. Diabetes Hands Foundation led the day, and the event featured many expert speakers, including FDA patient representative and type 1 patient Rebecca Killion, FDA’s Dr. Stayce Beck, Adam Brown and Kelly Close of diaTribe, and many more.

HOW YOU CAN BE A PART OF DIABETES ADVOCACY

Manny Hernandez of the Diabetes Hands Foundation led the Master Lab session and gave a compelling speech on the roadmap for diabetes advocacy.  Two main takeaways from his talk are:

  1. Take the Diabetes Advocacy Survey – This survey aims to identify the issues that key diabetes stakeholders consider the most important targets for advocacy. By taking this survey, you can be a part of the collective voice of people with diabetes calling for more coordinated diabetes policies.

  2. Follow the Leaders – There are already great organizations in diabetes working for patient voices. To join their efforts, please sign up for advocacy alerts from ADAJDRF (for type 1 advocacy), and AADE (to become an advocate for diabetes education).

WORKING TOGETHER WITH THE FDA

Dr. Stayce Beck of the FDA reminded us during her talk that we have great partners working with the diabetes community. Her presentation focused on the role of the FDA in regulating diabetes devices and advancing safe innovation, and we enjoyed the FDA’s focus on patient perspectives. In her slides, the FDA recognized critical patient needs such as devices that improve lives but don’t add more complexity, easy-to-interpret device data, and medical products that are user-friendly, safe, and effective. We were also glad to hear the FDA’s public commitment to moving the artificial pancreas forward, as Dr. Beck mentioned “big developments are happening rapidly.” 

Also at MasterLab, it was announced that the FDA will be hosting a patient meeting on diabetes this year, and we at diaTribe are excited to lead the discussion with the diabetes online community on November 3! Please save the date and read this issue’s new now next article for more information on how to get involved!

MAKING YOUR VOICE HEARD

The great Rebecca Killion shared her perspective working with the FDA as its patient representative, and gave recommendations on how to get the attention of decision-makers. First, you need to “stand in your own truth,” she said; this means being authentic and using your own voice and experiences. Ms. Killion also recommended getting to the point quickly and starting messages with something powerful,  as well as using visual aids like posters, graphs, and videos.

The meeting ended with an enthusiastic presentation from David Lee Strasberg, the CEO and Creative Director of the prestigious Lee Strasberg Theater and Film Institute, on how to make a successful “ask” (e.g., for a donation, for support, or even for a ride to the airport). He stressed the importance of building a relationship with the person you’re asking by finding a common passion, acknowledging the work they have done, and honestly telling your story. He also emphasized the need to have a vision, position the favor as an opportunity for others to gain or learn something, and to make the ask very clear so there is an obvious action item to be taken. And with that, we’ll make a clear ask for our readers: Please get involved to improve the lives of people with diabetes by taking the diabetes advocacy survey and following advocacy updates from the leaders. For more information on Master Lab and Diabetes Advocacy, Manny Hernandez created the Diabetes Action Hub at diabetesadvocates.org/masterlab

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