SPARC grant awardees - Meet Ebru from Turkey

11 July 2016

Ebru Tontas, 43 years old, is co-founder and board member of Kanserle Dans Dernegi in Turkey, one of the 20 organisations around the world receiving a SPARC grant - an initiative launched in partnership with Pfizer - to address the issues facing women with metastatic breast cancer in their own country. Ebru is the project manager for the SPARC grant project.

Why weren’t you able to carry out your project before being part of the SPARC program?

We have had great success with digital/online support model and wanted to improve and expand these services to the metastatic breast cancer community. However, we couldn’t secure financial support. Potential sponsors didn’t want to be associated with metastatic disease and preferred “success stories” as they describe them.

How has SPARC contributed to develop and grow your initiative?

SPARC was the fuel we needed to get going. We had the vision, ideas, manpower, dedication and desire. Being recognised as a SPARC awardee – amongst the 20 international organisations – helped us receive support from the medical community and subject matter experts in the field.

What are the qualities required for your job and why?

An inquiring mind, creativity, patience, devotion, vision, focus and love. Things are not going to change overnight, indeed they haven’t changed much in a decade, as the recent report findings show, but I am here to carry the torch that other have lit and I realise this is a marathon not a sprint. So, we have to keep the focus, start from the ABC’s and not let ourselves feel down because things move slower than we expected them to. We are all moving forward. 

What do you like most about your work?

Everything, it keeps on my toes and honest. I learn something new every day and thanks to this work I have met great people, visionaries. The collaboration aspect of it and how, from one project, we created several spin off projects is fascinating and very exciting. There is so much need and so little has been done that possibilities for service are endless. I feel privileged and grateful for the opportunity. 

How will the application you are developing improve your metastatic breast cancer patients' lives?

It empowers and enables patients to:

  1. develop better communication between patients and their healthcare team. Patients can record symptoms and email to them to a provider if they wish, or bring them along to visits, so there is no guessing
  2. help them express themselves via recording/journaling their progress and feelings
  3. ask questions to experts and receive answers so they are better informed
  4. use the platform’s calendar, medication reminders and important numbers to keep everything in one place
  5. share with others via the forum

And we offer these in a scalable multi language platform.

What do patients tell you when you engage them on the project? What do they think of the project?

We received kudos from the patients, they appreciate that we provide a safe community where they can interact with each other and receive answers to their questions. One of them recently said it was the first time she felt “heard”. 

Ebru Tontas - Kanserle Dans Dernegi
From left to right: Marina Teahon (UICC), Dr Fatima Cardoso (Chair of the Selection Advisory Group), Ebru Tontas, Dr Julie Torode (UICC), Riccardo Lampariello (UICC)

For more information on the SPARC MBC challenge please click here.

Last update: 
Tuesday 16 May 2017
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