FFL Canada Makes a Difference

This past weekend marked one of my favorite times of the year.  Its a time when I get to meet up with old friends, make new friends, and work with some of the most amazing people in the world…who also happen to live with diabetes.

Friends For Life Canada is truly that, a place where people walk into a convention facility as strangers and leave as friends for life.  This weekend I reflected on the fact that I had been friends with many of the CWD staff for close to 12 years now.  I have watched their children grow and they have become not just friends but important members of my family.

I have written before about the profound impact that the conference has on families and sponsors alike.  This year was no different.  Once again, at the registration booth, as reps and volunteers were packing up their boothes and leaving, we were told how awed they were by the experience.  The people involved felt that they were in the presence of something truly amazing. 

When I came home and got online again I found many posts from parents and bloggers stating how much they enjoyed the conference and can’t wait for the next one.  Families who had never been to a conference before thanked everyone involved and noted how their lives were changed. 

Despite the amazing impact that Friends for Life Canada has on families and its participants, one thing struck me again this year…the lack of corporate support.  There are a few companies that you see at every event.  They know the value of these gatherings and fully embrace them.  

Sadly, many vendors from Canada have chose not to be involved.  They are missing out.  Parents do not go to a CWD conference because of a loyalty to one product over another. Speakers and volunteers are not there because of their allegiance to one company.  We come together for support, understanding and to learn! 

I am honored to be part of the faculty at Friends for Life Canada.  They pay for my flight to the event and cover my hotel room.  In exchange, I address various issues and help out where I can.  I also enjoy being at the conferences to see what is new in the Canadian diabetes world.  In past years, I have enjoyed looking at various glucometers, seeing what is new in insulin, and of course comparing insulin pumps.  This year comparison was not an option.  I was not able to put my hands on a variety of new technology, including a pump which we are currently in the market for. 

I have contacts in the industry that I can go to for product information but it is not the same as seeing a new meter or pushing buttons on an insulin pump.  It is not the same as talking to people who are using various technologies and hearing what they think of these products.  

What disturbs me even more however, is that many of the parents at this year’s conference were new to diabetes.  According to the CWD report, 75% of these families were also new to a Friends for Life conference.  They do not have the contacts that I do.  They were not able to see and feel many of the options available to them.  They could hear about them in speakers’ presentations but they could not talk to companies and have their questions answered.  

Their option is to consider going to the Orlando Friends for Life Conference where an incredible number of vendors come together to showcase the best in diabetes care.  Why can they come together south of the border but not in a Canadian conference where travel is much less? Is our smaller market share less appealing? Do we not count because we are such a small population? I would hate to think that.  

The first time CWD came to Toronto, if memory serves me, there were three different insulin pump companies present. There were at least that many meter companies showing their wares.  There were pharmacies, sweetener alternatives, glucose companies, diabetes groups and more.  This year there was one pump company, one meter company, diabetes groups, and a few other constant supporters.  The rest of the diabetes vendors failed our families.  They did not give them the chance to become informed consumers.  They failed themselves by not taking part in the most amazing conference for families with diabetes in Canada. No CWD does not pay me to say these things. This is how I feel.  This is what other families feel.

If you have a company that caters to the needs of people living with diabetes in Canada, please consider coming to a conference. Please consider getting involved. I guarantee you that the return far outweighs any expense.  Ask people who have been.  Listen to the families…

“Thank you so much everyone for a fantastic weekend in Toronto. We had a blast!”

“I’m slightly depressed not being around my diabetic mates I met on the weekend.”

“it was an amazing weekend!”

“Thank you for a wonderful conference!”

and the list of accolades goes on.  Just imagine how they would have felt if they could have seen and touched more diabetes related “stuff”. If they could have played with more meters or touched more insulin pumps?

Conferences like this are only sustained through the help of sponsors and corporations.  Families cannot carry any more of the burden of cost…and those involved in organizing the events will not allow them to be further burdened.  I would hope that the Canadian diabetes products industry seriously looks at becoming more involved with Friends for Life Conferences. I promise you that experience will change you.  The tears on the children’s faces when they have to leave their new friends will melt your heart.  The camaraderie felt and shared by parents and grandparents will make you feel blessed to be there.

To those who have continued to sponsor and take part in this event…THANK YOU! To those who have missed out in previous years…please get involved NOW.

Some of my Friends For Life!

CWD Conferences are THE BEST!

I have said it time and time again, CWD conferences truly are the very best events out there for people living with diabetes.  Vendors who fail to take part are missing a lot.  Families who do not take part are missing a lot.  People with diabetes who do not attend are also truly missing out. 

Yes, I am part of the Canadian faculty which does mean that they cover my plane fare and lodgings while I am at the Canadian events but that in no way changes my perspective.  Actually it enhances it.  Each year I help out at registration and at that desk you see a lot. 

You experience the person who walks up and says “My toiletries, which happened to contain my insulin, infusion sets, sensors, and reservoirs did not make it into my luggage.”  Before this person can ask if anyone has anything to spare, three people offer everything that they could possibly need to handle their diabetes for the weekend and everyone is able to enjoy the conference without a second thought. 

You also get to see the smile on a mother’s face who says “In my rush, I forgot to bring the gluten free snacks for my child but you have an entire buffet dedicated just to her needs!  I don’t need to worry about her at all!”  

I learned a few other benefits this conference as well.  When you lock you key in your room, your son is off site with the other key, and you need to be in your room to get information for your presentation which will take place in less than 15 minutes, the lanyard around your neck with your name will get you a new room key! 

While sitting around a lunch table, I learned that others have used the “D” card on occasion for convenience. If you don’t want to get stuck in a room with an annoying coworker, tell them that you are low and need to check.  If you don’t want to share that amazing piece of chocolate cake? Tell them that you are sorry but you already pre-bolused for the entire piece.  

The most important thing that was reinforced for me during this conference? The value of friendships–new and old.  I watched two young boys pose arm in arm for a picture.  You knew that the friendship was struck up at this conference. I met people who were previously just names online and enjoyed getting to learn a bit more about them.  And as always, I enjoyed time, talk and meals with friends that I have been blessed to have in my life through the ups and downs for the past eleven years.  There truly is nothing better than a CWD conference!

Do They Know What They Are Missing?

I was again honored to be a part of the Children with Diabetes Friends for Life Vancouver Conference this past weekend.  As a member of the faculty, I enjoy interacting with the many families who attend the conference, chat with some of the vendors and learn from the other staff and faculty whom attend.  It is an amazing experience. 

Over the past few years I have been a little discouraged at the lack of support from Canadian vendors.  Each year that I attend, I hope to gain some insight into which insulin pump I should chose for my son. His warranty will soon be up and what better place to learn about pumps then at a diabetes conference?  

Last year, when the conference was in Toronto, one of the major pump companies was obviously missing. I was quite disappointed because I had decided that I wanted to seriously look at their CGM integration. A few other companies also seemed to be missing but the event was still a great success. 

This year, when looking at technology, the pickings were even slimmer.  There were only two pump companies to chose from.  There was only one glucometer company to check out.  There were no insulin companies showing us the new directions that insulin and other hormones are headed in.  There were no sweetener booths showing us the awesome ways that better tasting alternatives to sugar could be used. 

There were some great companies present.  Children could decorate OmniPods.  Everyone loved dressing up and having their picture taken at the One Touch booth.  There were new gaming apps on display by an innovative company called ayogo as well as booths from Store a Tooth, MyCareConnect, Dex4, CDA, JDRF and more.  

At the beginning of the event, I was really disappointed by the poor Canadian corporate support to families living with diabetes.  Why were we not important? Did they feel that they were already reaching us through social media and did not need to be “seen” at such an event? 

As the event came to a close, my perspective changed dramatically.  I am sure that Jeff Hitchcock, Laura Billetdeaux and the other CWD staff experience this all of the time, but it was a bit novel for me.  I had vendors coming up to me as we were leaving thanking me (I spend a lot of time directing people from the registration booth so they have seen me a few times)! They were grateful to have been a part of such a special weekend.  They were honored (as I always am) to be involved in something that touches so many.  

I am not sure why the “other guys” don’t think that they need to attend CWD Canada events.  I know that they are truly missing out!  These events do more than bring families together and connect kids with new friends who also have diabetes–they create friends for life.  They create memories.  They inspire. They touch our hearts like nothing else can.  

The North and The South

For years, those of us living with diabetes in Canada have looked to the south and drooled.  Because of the much, much larger market share, the US gets all of the “good stuff” long before it comes to Canada. In fact it took us so long to get the Navigator, that they stopped making it before the product ever crossed the border!

Our American cousins have had the DexCom for years giving them a choice when it comes to CGM technology.  They had OmniPods before us and now will be looking at yet another pump choice in the Tandem TSlim in the coming months. We got the Medtronic Veo pump that they want first but that seems to be where our advantage ends. 

In talking with a friend recently, we also noted that there seems to be a big difference in attitude between US pharmaceutical companies and those working in Canada.  In the past two years with  Roche Summitt and Lilly Diabetes having their own Blogger Summitt in 2012, these companies have invited people living with diabetes to get together with pharmacy and discuss technology, needs, and direction.  This was a huge thing in the diabetes world–big companies wanting to know what patients want? Sadly, despite the increased number of diabetes diagnosis in Canada, we are not seeing the same sort of engagement here. 

Don’t get me wrong, some companies in Canada do reach out to the consumer.  Animas just did a great PR event in May showcasing people with diabetes across the country.  Roche invited bloggers and their readers to get engaged and give away free cash in the spring. Despite that, there still seems to be a feeling of isolation and we just don’t matter. 

As my friend noted, “A few years ago, we would get a newsletter or an invite to a workshop, special speaker, etc two or three times per year.  Now…nothing.” She is not alone in this.  Are the major players that intimidating and confident that they do not feel that they need to engage the market? Do the other littler known players not have the budgets to do it at all? It makes you wonder and personally, it makes me sad. 

Not only are we not getting to do the “fun stuff”, not only are we not getting access to the best technology, we are also forgetting about the other players on the board.  If you ask Canadians what pump companies are out there, they will most likely say Medtronic.  Some will know Animas but then things get fuzzy.  They may know that OmniPods are now available north of the border but chances are that they have completely forgotten that Roche even makes a pump.  This makes me sad because it is so important for consumers to make an educated choice in their diabetes care. They can’t do that if they don’t know that the products exist. 

I wonder how many people realize the vast choices in glucometers or that they have a choice of infusion sets or rapid acting insulin? Again, it  makes me sad and leads to me ask, is it really all about the money? Does our Canadian perspective and the needs of those of us in the northern part of the western hemisphere not count for as much? Is it bureaucracy? Does the Canadian government and various legislations make it difficult for pharmaceutical companies to be as engaged as their American counterparts? I wish I knew the answers. Some days I think it would just be better to move south…  


A stroll down Diabetes Memory Lane

In time for the last day of the Children with Diabetes Friends For Life Florida Conference…

It must be spring.  There is still snow flying around outside and my winter boots were on my feet today but I have noticed a restlessness in the air.  I was reading a blog in which the author felt that maybe she was not doing enough in the diabetes community despite raising awareness and entertaining many of us. 

I have had that same feeling in the pit of my stomach.  That question of what are you doing and more importantly–how do you do it better?  I have yet to have any great epiphanies but it did motivate me to start a new project. I decided to “tweak” my website. I am seriously thinking about completely rebuilding and cleaning up the current format.  I found a search engine to make looking through the site that much easier but I still have to decide what my spring website look should be.  In the meantime, I decided that a movie of some of our greatest memories would be in order for the home page

I began a journey back in time as I looked through old photos.  I truly hate Diabetes with a capital H but the warm memories I found in the pictures really helped to ease the pain. I found pictures of a trip we went on to New York.  Many of our online diabetes friends got together and we had a fabulous day at the beach.  There was no awkward time of getting to know one another.  We instantly had known each other for years and the day was amazing.  

I found pictures of our trip across Canada.  Again, there were photos of the many friends we met along our travels.  There was a barbeque in Ottawa, a night in the interior of B.C.  as well as introducing Rufus, the bear with diabetes, to many of our family members. 

As I dug around, I found the photos of our trip to Friends for Life in Florida.  I remember again, sitting down to drinks with “old” friends and having my son disappear with his pals to enjoy his vacation.  There was basketball and Disney World rides for him.  There was pump failure and great contacts for my other son and I.  We found out that the best place in the world to have a pump malfunction was at a CWD Friends for Life conference.  The friends and resources you will find are second to none!

I came across pictures from our Friends for Life Canada conferences and began to look forward to reconnecting with old friends again this summer.  There were walk photos and I remained amazed at the generosity and enthusiasm of so many amazing people.

I still don’t know how I will tweak the site.  I still am working on getting the movie completed and online.  I have however had a day filled with smiles and wonderful memories.  Thanks to all of the great people in our lives who helped create these memories and so many more!

Mom, she injected herself!

Friends for Life Canada is always a chance for me to catch up with old friends and meet new ones.  One of my tasks each year is helping out with registration.  I love it because affords me the chance to meet people as they are coming through the door.  It always amazing to see how far people have come to connect with other families living with this disease.

Registration in Toronto this year was a pleasure. Everyone arrived at different times and we were able to make sure that their initial experience was a positive one.  We saw people from all over Canada, the US and even a family from the UK.  It was great to be able to put faces and families with names that we had interacted with online for months or even years as well as connect with new people. 

As I have said, my son is very private. He is not interested in sharing his diabetes experience with others. He hates being the center of attention and is often very shy when people who know me come up to him.  He is growing up however, and did interact with a few people and answer a few questions when asked. 

On Sunday, the conference drew to a close. I was exhausted after a very busy day.  My son was glad to see his bed after walking and site seeing with the teen group all day.  My exhaustion led me to the restaurant for food and drinks with friends before we all headed our separate ways for another year.  My son was more interested in bonding with the bed and TV than joining a group of adults. We agreed to meet at the elevators and I would take him to grab a bite to eat before I settled into dinner with my friends.

At the elevator, I met up with one of the families that we had spent a bit of time with over the past few days.  They asked if my son would like to join them for supper. I asked him and he said sure.  I was pleased that he would be spending time with a family that I had already had the pleasure of getting to know a bit as well.

From across the room, I watched their interaction. There was laughter and fun.  They had three children, one of whom was my son’s age.  There seemed to be a connection.  As time passed, I was surprised to see that they were all still engaged and my son had not bolted to his room. Things were obviously going well!

Eventually the evening came to a close.  We said good-bye and hoped we would be able to keep in contact. When we were back in my room my son told me about his evening. He had had a great time.  He turned to me and said “Mom, she injected herself–twice!”  My son has been on a pump since he was five. Despite the fact that he should learn how to inject in case of a pump failure, its something that he has never done himself.  He was very impressed that this girl, who was a few years younger than him, had been so self-sufficient and done this on her own. 

I was impressed that he had noticed and said something. One day, perhaps we will get the chance to talk to them all again. They definitely left a wonderful impression on us and hopefully we left a positive impression on them.  Have I mentioned how much I love and appreciate the opportunities for friendship that CWD conferences afford?

Four “Friends for Life”!