Tag Archives: Events

Sign up for these public meetings.

Hello…. I hope everyone’s week has been grand. For me, life has been a series of meetings and appointments and lots of work. While I have a moment, I want to let you know about two upcoming meetings that offer both educational and advocacy opportunities.

On April 26 and 27, there will be a meeting at the offices of the National Institutes of Health in Rockville, Maryland. The National Institute of Diabetes and Digestive Kidney Diseases (NIDDK) is chairing an interagency coordinating committee meeting where, in this case, they will be talking about prioritizing Type 1 diabetes research.

Like so many meetings, this one is open to the public. There will not be an opportunity to make public comments in person, but there is a way to e-mail your concerns ahead of time. Then, if you are able, you can go to the meeting and be the eyes and ears of the community, so to speak. We need that sort of thing in these forums.

To find out more, and to register, CLICK HERE.

———————————————————————————————–

On May 12, there will be another public workshop at the U.S. Food and Drug Administration. This one is specifically advocacy-based. In this workshop, attendees will get direct input from FDA staff on the roadmap for approval of new drug therapies. You’ll get tips on how to make your voice heard in the approval process. And you’ll get additional information on how FDA uses the patient voice to help make informed decisions, while protecting patient safety.

This is a great opportunity to learn how the sausage is made. Metaphors! I’m full of metaphors today!

The workshop takes place at the FDA’s sprawling White Oak campus in Silver Spring, Maryland on Friday, May 12. To find out more, and to register, CLICK HERE.
 
 
That’s what’s happening near where I am… what’s going on in your part of the world?

The Diabetes UnConference Atlantic City.

Another Diabetes UnConference is in the books.
unconferenceac
This one was the first UnConference on the east coast of the USA. It will not be the last (more on that in a minute). Resorts Hotel and Casino was very kind for our few days along the New Jersey coast, and other than scorching late summer temperatures, the weather was great. Beautiful sunrises and sunsets.

What made the weekend really wonderful was the same thing that makes every UnConference special: the people.

There is something refreshing and honestly, for me anyway, necessary about getting together face-to-face with others who live with diabetes every day, discussing the things that are important and frustrating and funny and scary and sweet (no pun intended) about something that we understand better than anyone else: our own diabetes.

Each Person With Diabetes in attendance knows their life with diabetes better than anyone, and each attendee was able to convey their feelings and expertise on a variety of psychosocial aspects of living with this condition in a unique and respectful way. The format, along with our social media blackout during sessions, made for a safe place where everyone felt Welcomed, Valued, Respected, and Heard. Each Person who Loves Us (PLU— it’s a thing) in attendance was able to share, also in a comfortable, respectful, safe space, how it feels to share a life with a PWD.

As a facilitator in many of the sessions, I was once again humbled by the openness of people who have lived with diabetes for decades, and people who have lived with diabetes for just a few years. Many from the USA, and some from other countries, all seeking to understand themselves, each other, their jobs, their lives at home, and so much more. In the process, friendships were made, existing bonds were made stronger, and in one case, actual physical assistance made all the difference in a difficult moment. When the moment was over, it meant so much to be able to spend time with people who understand… people who get me. Priceless.

I think we all learned a lot. We certainly shared a lot. I think we all understand how important it is to:
#FindYourTribe

The next Diabetes UnConference will be at the Westin Las Vegas February 10, 11, and 12 next year. And I’m happy to report that The Diabetes UnConference will be coming back to the east coast in October of 2017. It will be in the Washington, DC suburb of Alexandria, Virginia. Details to come at a later date. If you’re looking for a little assistance to get to Vegas, the scholarship window is now open.

There is nothing like finding a safe, comfortable place to discuss the things that are most important to you. Especially when you live with diabetes, or you’re close to someone living with diabetes. Our pancreases don’t function properly. Our hearts are beautiful.
 

#FFLFC16: A Weekend Well Spent.

Over the weekend, I was able to attend another gathering where People With Diabetes were able to learn, share, and enjoy the company of one another.

From the team that brings you the Friends for Life conference in Orlando each July, the Falls Church, Virginia version was a welcome weekend spent with a different group than I’m used to hanging out with.

But that’s good, because I like families, I like kids, and I definitely like meeting new people. Over the course of two and a half days, I was also able to get back up to speed on the latest in Artificial Pancreas research from two groups, get firsthand accounts of the amazing development of the Nightscout system, and I was able to take in (and speak with attendees) about advocacy issues including Medicare CGM coverage, our relationship with FDA, #SuspendBidding, and more.

This event was pretty well attended, and the location couldn’t be better. From a purely personal perspective (and this has nothing to do with the content of the conference), the buffet meals were really good. Lots of options, including gluten free, and carb counts on everything.

The content of the sessions, as you might expect, varied depending on whether they were for adults, kids, or parents. The adult sessions included Dr. Korey Hood from Stanford covering diabetes burnout; a guide to applying the glycemic index to what you eat by Gary Scheiner; nearly a full day on diabetes advocacy from the super team of Christel Marchand Aprigliano and Bennet Dunlap; and finding support through social media with Kerri Sparling.

There was also an exhibit space that featured every U.S. pump maker except Medtronic, Roche (and their latest Accu-Chek meter—I’m interested), the Diabetes Patient Advocacy Coalition (with laptops people could use to e-mail their elected officials in Congress and the Senate!), and both the American Diabetes Association and JDRF.

A couple of tidbits from the weekend: we were told that this was the first Children With Diabetes conference that featured more adult attendees with diabetes than kids or families. And, it looks like Jeff Hitchcock and Laura Billetdeaux are looking at options to come back to the Capitol area for another conference very soon. Which I think would be fantastic. It was three years between events in the D.C. area, and that’s too long to wait.

The Great Spousal Unit likes to say that after a diabetes event, I come home more energized, and walking on air for a considerable time afterward. Since she made the trip with me this time, I think she now knows why. I hope she does. Because no matter how often I gather with people who walk the same path I do, it still means a great deal to me to be together with them in the same space.

Thanks to all of the staff and volunteers at Friends for Life Falls Church for being so welcoming, helpful, and informative. And in case you were wondering, I was not given anything to say that. It comes straight from the heart.
 

#HealtheVoices15: We are not alone.

April 17 through April 19, I attended the HealtheVoices Conference in Jersey City, New Jersey. Janssen Pharmaceuticals paid for my train travel, hotel, and meals so I could take part in this gathering. In case you’re wondering, all opinions expressed here, or using the #HealtheVoices15 hashtag are entirely my own.
HealtheVoicesConference
I spent last weekend at something called the HealtheVoices conference in Jersey City. Unlike all of the diabetes conferences I’ve attended in the past three years, this conference brought in people living with a host of different chronic conditions.

And you know what? I discovered we are not alone.

Okay… sure… I knew that People With Diabetes are not the only ones living with a chronic condition. But when you get immersed in a cause, after a while, you tend to forget about the others who are out there working on different causes, lifting up others living with a different disease. One of the really cool things about this weekend was the opportunity to see and hear from people living with and advocating for those living with Chron’s disease, HIV, Rheumatoid Arthritis, Cardiovascular issues, Breast Cancer, Prostate Cancer, and so much more.

The presentations were well thought out and well presented. I liked learning how people are making a mark in their own patient communities. There were also presentations where we learned about the legal ins and outs of writing a blog, how to take an idea and get it funded, and the importance of telling our stories online and engaging with others to create a better community.

And just like the diabetes conferences, there was real value in the one-to-one, peer-to-peer conversations that happened over breakfast, lunch, dinner, and between sessions. Some of the best ideas I heard, and some of the most inspiring things I witnessed, came in those quiet moments where someone was able to share what they’ve experienced and what they’ve learned with a bigger audience. I got to watch groups from other conditions gather and share and laugh together, just like PWDs do. I found that the power of “me too” isn’t exclusive to diabetes.

So by now, you may be asking: What about the diabetes people in attendance? Well, let me tell you… the diabetes team absolutely rocked it this weekend.
BlueFridaysCheriseKarenKim
Cherise, Karen, Kim, and also Christel and Kerri (who also presented and was on the advisory panel for this conference) were sponges who spent equal time gathering information, listening to others, and sharing their stories and tips with others. They were tweeting like crazy and asking questions and engaging in conversation. One of the other things I learned about this weekend is that we’ve accomplished an awful lot all on our own.

I should also take a moment to thank the people at Janssen who gave up their weekend for this event. Thanks especially to Rachel Yurchak and Caroline Pavis, and to the people whose last names I don’t remember, like Stephanie and Beth. You made us all feel welcomed and important.

I’d like to think I’ve met a few people that I’m proud to say are friends now. I’d also like to think that I’ve found a few new things to aid me in my advocacy efforts.

Listen… My diabetes community bubble is good. It helps me when I’m down, it inspires me to perform advocacy, it has changed my life in a positive way forever. The great thing about the HealtheVoices Conference was that I could see, and learn from, additional communities that are doing the same thing, with people who are just as inspiring, and who encourage me to do better and be better. I will never forget their stories.
 
 
 

Heading out again.

As the sun begins to break through again (thank you rain, but thank you sun!), I’m all packed and ready to head off to something called the HealtheVoices conference in Jersey City… wait for it… New Jersey.  It’s just across the Hudson river from Manhattan.

This is not just a diabetes conference– there will be a number of online patient advocates in attendance who are dealing with a myriad of medical conditions, including HIV, breast cancer, cardiovascular issues, Chron’s/colitis, and many others.  I’m very interested in getting ideas and perspective from people living with and affected by conditions that are not my own.

The conference has been put together by Janssen Pharmaceuticals, which, among other things, produces the Type 2 medication Invokana.

This is where I tell you that Janssen Pharmaceuticals is paying for my train travel, hotel, and meals so I can take part in this gathering.  In case you’re wondering, all opinions expressed here, or using the #HealtheVoices15 hashtag are entirely my own.

This is the first time a company has invited me, at their expense, to attend a conference.  Guess I should think about creating that disclosures page now.

If I can, I’ll let you know what’s happening when it’s happening. Otherwise, I’ll try to give you a recap later on.

I hope your weekend is off to a great start, and I hope the nasty weather stays away from your part of the world too. Talk to you Monday!
 
 
 

%d bloggers like this: