Wednesday, July 13, 2016

Masterlab: Diabetes Hands Foundation

To say life has been a whirlwind of the highest highs and lowest lows (emotionally, not blood sugar...ly) over the past 6 months would be an epic understatement.



When I was offered to travel to the Friends For Life conference this past week and attend Masterlab hosted by the Diabetes Hands Foundation- I was absolutely excited...and incredibly anxious.

On a good day, meeting new people can be hard for me. I struggle with small talk, and sometimes I launch in to a complex topic involving big opinions, when the person simply wanted to know where I was from, and how my day was going. I sometimes find myself editing conversations before they happen. I wasn't always like this, but going through a job loss, and a massive life change like marriage all at the exact same time is hard. Re-finding my meaning, and ensuring I am still who I am after bomb after bomb detonates in my life means my self-esteem and self-awareness are on high alert.  So being in a group of thousands of people who are always ready to greet you with small talk, and big hugs was a challenging thought for me.

Of course, I am never one to back down from a challenge.

Masterlab is a one day workshop for people looking to elevate their advocacy efforts to make the lives of people living with diabetes better. It brings together advocates form all over the world and has them in one room to listen to some great speakers. I did take some great notes on what I learned from some of the speakers.

I will say that I didn't take notes on all of them. I got some great global ideas, but the heavily Americanized presentations were soaked up with moderately less vigor than those that had broader ideas in advocacy and bettering oneself.

If you think that what DHF is doing is remarkable, please support them! You can make a donation HERE

Onward! Here's what I have in my notes and memory:



Roniece Weaver was a fantastic speaker and presenter. She works with primarily low income and at risk communities to better their health, up their health literacy, and help them secure fresh foods in food desert areas in central Florida. She is a certified dietician, an educator and a kick ass inspiration for what a woman can do when she is driven and dedicated. Hebni Nutrition Consultants work tirelessly with the people who need help the most, but most often wouldn't be able to afford proper nutritional counselling or specialists. She has worked with mom and pop shops in at-risk communities to bring in fresh fruits and vegetables giving people (most often minorities) choices in their grocery trips. Then, she goes the next step, and sets up in community centres, or her office to teach these people fast and easy healthy foods that they can create for their family.

Anyone who knows me, knows that I am passionate about people understanding what healthy actually means. I am not someone who would ever judge, shame or blame anyone for their choices, but knowledge is power. Roniece understands that. She put her knowledge and drive to good use.

I think a lot of advocates can learn from her. Not only is she helping people who are living with or at risk of developing diabetes, but she has taught us that we can achieve whatever we are putting our mind to. She explained how to search for grants and government dollars for special programming like her Mobile Food Market.

Her Mobile Food Market is a bus that brings fresh fruit and vegetables to schools and communities and sells it at a discounted rate. This is breaking down barriers for people who may never have seen a fresh tomato in their life. For more information on the Mobile Food Market and what Roniece does read HERE 




George Huntley and John Griffin gave me some great ideas for a future blog post. I won't get in to that now, but I will say their dedication to making the lives better for people with diabetes is incredible. John is a lawyer and George comes from a biotech business background, but they both work tirelessly with the American Diabetes Association ensuring people's rights are protected as they move through their lives with diabetes. 



Ellyn Getz presented on the importance of participating in research and clinical trials in order to advance our lives with diabetes. I found her information useful, even though I was already familiar with a lot of it. I think she gave a fantastic overview of the participatory process for patients, and encouraged everyone to get out and search for some trials if it would be something they would be interested in.


While Jay Keese's presentation was heavily, heavily geared towards Americans, I did get some great snippets from him. He was an excellent presenter with a LOT of fantastic motivating information for us. He works with the Partnership to Fight Chronic Disease, and advocates for better policy and treatments for people at risk of, or living with chronic illnesses. He has a lot of experience shaking things up and his tips were as follows for getting on your legislators good side:
-Register to vote
-Get involved
-Get out to an event hosted by your representative
-Always start small
-Research what your rep is interested in and know your role
-Research and fully understand where and how decisions are made and once again: GET INVOLVED
I agree with a lot of his messaging and would have loved to be able to have him expand with some Canadian content.

 
Hope Warshaw and Kurt Anderson presented on AADE (American Association of Diabetes Educators). I was half tuned in during this presentation as it didn't relate directly to me or my care/advocacy plan. However I found it fantastic that Hope and the rest of the AADE team are working on expanding their members' engagement with the online community. When professionals start to understand how important the online community is to a patient, there is an evolution bubbling underneath. I also noted that Hope and other AADE members pulled aside a Masterlab attendee after the day, to speak to them about their research in the importance of patient communities.
 
I wonder how I can transfer this knowledge to Canada? I feel like a tadpole in the ocean here with very little voice. My writing and advocacy is better recognized in the USA and I feel that is wrong. I am legitimately more effective in the US than here, and I want nothing more than to change that.
 

Dr Mark Heyman was one of my favourite presenters of the day. Over the past year or so I have severely struggled with separating my personal diabetes from my advocacy. I was trying to find a balance in sharing what is necessary and taking care of myself. Mark gave a fantastic presentation on how to practise self-care in the world of chronic illness management. Dr. Heyman lives with T1D and practises what he preaches.

We did some activities with the group, discussing what our biggest barriers to self-care was, was my favourite.

In the room we had people who were living with or caring for all types of diabetes, from all parts of North America, and all different  levels of access and understanding...however we all seemed to have the same barriers to self-care:
-Guilt
-Anxiety
-Logistics/time
-Boundaries
Just looking around at the incredible diversity in the room and being equally connected to those people in our frustrations with being an advocate felt really validating.

After Mark's presentation I felt less guilty about taking a break from my personal blog to focus on my own care and mental health. After Masterlab I had a chance to talk to Mark at the lobby bar, and I can confirm he is a fantastic person to chat with as well. I truly respect him and wish that his services were closer to me. San Francisco is a bit far to travel for a mental health specialist appointment, I am not sure my insurance would cover my travel expenses ;)


So..what did I gain?

Vigor.

I needed a boost, I needed to be reminded that my voice isn't as weak as I had been made to feel in the past year or so. I learned that the work I have done is valid, even though I was told it wasn't. I learned that we have SO FAR to go in Canada. I need to develop closer connections and continue to bring this knowledge home, and spread it.

So in my spare time I am continuing to research and build on my knowledge.

Thank you, Diabetes Hands Foundation. While there were bumps in the event, it was an incredibly valuable and rewarding day on a personal scale. Meeting people face-to-face to discuss our similarities and differences will forever be the most useful part of these events. I love to learn, and facilitating that means so much to me.
 


4 comments:

  1. On behalf of the DHF and TUDiabetes we were delighted you could attend. It is so much fun and great to meet everyone.

    I referred your blog to the TUDiabetes.org blog page for the week of July 11, 2016.

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  2. Thank you so much for sharing Alanna. I saw some of the presentations on periscope and I am in complete awe on Roniece! But I did miss a lot of the day and you just made up for that a little bit! 😀

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  3. Mark was my favorite presenter too.

    It was so great to spend the week with you, and I'm glad we found lots of time to hang out!!

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