I cannot imagine my life without my daughter.
I cannot imagine my life without the insulin that keeps me alive so that I can hear her laughter.
And yet… there are children in the world who do not have access to the insulin that will keep them alive.
In parts of the world (some closer to the U.S. than you think), there is a problem getting insulin to children.
Lack of access to insulin remains the most common cause of death in a child with diabetes (Gale, 2006). The estimated life expectancy of a child who has just developed diabetes could be less than a year in some areas (Beran et al, 2005). Many die undiagnosed, others through lack of insulin or lack of expert care. In some countries, expert care is available but resources are limited and so early and serious complications frequently lead to death in young adulthood. – IDF
We know that insulin is expensive in the United States, but for some families in the world, the cost of insulin is more than a family will make in an entire year. And you know what can change that?
For the past few years, the Spare A Rose, Save A Child online campaign has helped to raise funds for the International Diabetes Federation (IDF)’s Life for a Child campaign.
Life for a Child began over a decade ago and gives donor funds directly to diabetes centers around the world, getting children insulin, test strip supplies, and care to help these children live… and laugh.
How Can You Help?
Valentine’s Day is coming.
Flowers are pretty. Chocolates are nice. Perfume smells lovely (Sometimes.)
But flowers wither. Chocolates get eaten. Perfume wafts away into the air.
You deserve more than that.
The cost of a single rose. Or a very expensive piece of chocolate. Or a few spritzes of perfume. (Or even that teddy bear that gets purchased at the gas station on the way home.) Five dollars gives a child with diabetes in an underdeveloped country a month of life.
Let those who love you know that you’ll take one less rose. One less piece of chocolate. Skip the spritz. You want them to give five dollars (or more) to the Spare A Rose, Save A Child campaign.
You can have them donate once or… they can remind you that you are loved throughout the year with a monthly gift to the program. You get a sweet acknowledgment and the knowledge that you are helping people all over the world hear a child laugh.
Want to get your office in on the action? Done. Easy-peasy-give-insulin-to-kids-squeezy.
Your donation is tax-deductible. (So, for those of you who are romantic AND financially savvy… you can say I love you and write it off. It’s still sexy.)
What About People YOU Love?
You love them more than life itself.
Click here to give life for a child.
I took a little blogging break last week. It wasn’t intentional; I had other things cooking on the burners and gave them the time that was due to them. In the end, it all goes in the same pot, but it was strange to not write. (And that’s the extent of my chef metaphors.)
And now I sit with a large amount of caffeine, thinking about the good things that are happening in the diabetes world. In no particular order…
The Power of Community
According to an unofficial total (but from a source I trust), the Spare a Rose, Save a Child campaign raised…drumroll, please… $26,519. That’s a lot of insulin. That’s a lot of love. That’s a lot of lives that will be saved because the Diabetes Online Community raised their voices as one. I am in awe of the power of this community. For those who shared the message, thank you. For those who donated, thank you. (And it’s not too late to give a rose… )
Just because we’re not shaking the gates in person doesn’t mean that we aren’t working on ensuring blood glucose meter accuracy isn’t on our minds. Larry Ellingson has a guest blog post over at StripSafely.com, asking us all to join him in calling for congressional oversight of meter accuracy. I had the pleasure of meeting Larry at the DTS meeting in September, and I’m glad he believes as we do: whatever it takes to make sure we stay healthy and safe.
Think meter accuracy is not important? Larry gives another statistic that scares me (and it should scare you, too!):
A second survey confirmed that 27 percent of patients with type 1 diabetes had experienced health problems due to inaccurate blood glucose meter readings.
The FDA can only do so much at this point. It’s up to us to rally together to bring Congress the news: we need their help. Bennet and I will be putting together some points that you can use when talking with your representatives soon.
It’s an i-port Advance
Medtronic announced the i-port Advance, an “all-in-one” injection port. For those who take multiple daily injections, it basically takes the place of injecting into different places… and into the injection port. You insert the i-port Advance and for the next 72 hours, you inject into the port.
Injection ports aren’t new. I remember using an injection port years ago. (I don’t remember why. It was probably a sample or two to see if I liked it, but obviously I didn’t care for it, because I didn’t use it for long.) If you have needle phobia, it’s a great way to ease the fear of having to inject more than once a day. If you micro dose fast acting insulin for optimum control, this may be a great way to avoid seven or eight injections each day.
There was a study done in 2008 about the impact of insulin injections on daily life and the results didn’t surprise me much. The study showed that out of 500 subjects, 29% of them stated that injecting insulin was the hardest part of their diabetes care. Fourteen percent of the subjects said that insulin injections have a negative impact on their life. So… obviously there’s a need to help alleviates some of the negativity. The i-port Advance is one way to do so.
The Future of Glucagon
For anyone carrying around that red hard case in the bottom of a bag or a purse or next to your bed, you will nod your head when I say this: Glucagon is a pain in the ass. (Sometimes literally.)
The Glucagon Emergency Kit has been around for quite a while, but unless you’re with someone who knows how to use it, it’s useless. If you pass out, the last thing a stranger will do is rifle through your bag looking for something to help you. Even if you’ve shown a friend or a work colleague how to use it, when push comes to shove (or push comes to drop on the floor), it may be too complicated.
True story: I would give a little primer about my glucagon emergency kit to my staff. New team member = pull it out and go through the motions. I would end every discussion about glucagon with this: “Call 911 first. Then attempt to inject me.” Then the discussion would be who would draw the short straw to do this. I trusted my team, but knew that glucagon was a last resort.
These days, I’m hopeful that glucagon will be available in an easier delivery mechanism - and perhaps even not by injection! Mike Hoskins over at DiabetesMine has a great article about Next-Gen Emergency Glucagon, in which he discusses the big issue: stability of glucagon. (Currently, once mixed, it’s good for 24 hours. After that, pfftt.) But even more exciting? This:
Assessment of Intranasal Glucagon in Children and Adolescents With Type 1 Diabetes - Yes. It’s a clinical trial that currently is recruiting kids for an intranasal dose… Could this be more awesome? Nope. I am hoping that this is what’s in store for all of us. I’d be much happier giving a primer about: Hold this up to my nose and squirt. Wouldn’t you?
By the way, there’s also a trial for adults: Effectiveness and Safety of Intranasal Glucagon for Treatment of Hypoglycemia in Adults. You can get a little more info here: Evaluate the Immunogenicity of a Novel Glucagon Formulation. The company behind this is AMG Medical, Inc. out of Canada. I’m eager to see the outcome of these trials!
So, as I sit here this morning, I’m buzzing with excitement (or is it caffeine) with hope for the future. What are you excited about?
Do you agree? (At least about the diabetes issue.)
The DOC (Diabetes Online Community) agrees and we want to raise awareness (and donations), so that the International Diabetes Foundation’s program, Life of a Child, can give children with diabetes the true profession of love: life through insulin.
Life of a Child began over a decade ago and gives donor funds directly to diabetes centers around the world, allowing those centers to help children with clinical care. Over 12,000 children in 43 countries are given the gift of life through this essential program. But that’s not enough.
Lack of access to insulin remains the most common cause of death in a child with diabetes (Gale, 2006). The estimated life expectancy of a child who has just developed diabetes could be less than a year in some areas (Beran et al, 2005). Many die undiagnosed, others through lack of insulin or lack of expert care. In some countries, expert care is available but resources are limited and so early and serious complications frequently lead to death in young adulthood. - IDF
From as far away as the Solomon Islands to as close as Haiti and the Dominican Republic, children with diabetes need help. It’s atrocious to think that some children lose their lives because diabetes care is more than an entire family makes in a year.
Please consider donating the cost of a single rose ($5) to the Spare A Rose, Save A Child community effort. (Or more…) Your sweetheart still receives flowers and the knowledge that you both helped to save a life.
Now, I know you’re asking… “So, I donated the money I would have spent on a rose (or a dozen roses, because you are totally amazing), but now what do I give my beloved?”
You give them a spiffy certificate - and you have your choice of two!
Both are adorable.
The goal this year is to raise $10,000. That’s a lot of roses. That’s a lot of love. That’s a lot of life.
Show your love to those you love and donate.
(And P.S.? Even if you can’t donate, would you share this with your friends on social media or email? It’s hard to love you more than I already do, but I can try, right? Thank you.)
As I said in my previous post about the Diabetes Advocates Forum, we heard things from Medtronic and we also heard things from each other.
It took very little effort to transcribe the few notes I took about the technology aspect of the Medtronic Diabetes Forum. The difficulty I have in sharing (more than my initial thought) what those in the room said to each other comes down to this: I am still processing what it means to us as a community and to me as a person.
The afternoon of the first full day was spent in a brainstorming session led by Bennet Dunlap, George Simmons, and Scott Johnson. Rapid fire, small groups, top answers. We made fast work and faster decisions about what we saw as ways to use social media and our voices, but one of the questions (and one of the brilliant answers given by Sara Nicastro) caught me off guard.
To paraphrase, the question was this:
“What can you, as an individual, do to help the community as a whole?”
Sara’s answer stunned me. “Get the F* offline.” (If you know Sara, then you’ll realize that she doesn’t curse. She used the notation F* to mean exactly how serious she was, but she didn’t actually use the expletive.) Sara is heavily involved with her local JDRF chapter and did an incredible job fundraising for the JDRF walk. She recognized her strength and is looking to bring that spirit to her local offline community. (While spending a ton of time sharing her talents online as well. I’m in awe of people like her - and her.)
Others shared their thoughts and ideas and we came up with a doable list, although it won’t all happen at once or even this year. I see each of the ideas forming into concrete plans broken down into workable pieces, some of which will take funding while others will take people power.
The second afternoon was handed over to David Lee Strasberg of the Lee Strasberg Theatre and Film Institute. He’s a T1 and a T1 parent, so he’s part of the club that no one wants to be in…two clubs, in truth. Strasberg’s father, Lee Strasberg, trained a lot of the great actors using the “method acting” technique and his methods continue today. David used his skills and talents to teach something that may seem simple, but isn’t: asking.
According to Strasberg, there are four steps to asking:
- Build the Relationship,
- Share the Vision that connects you with the others in the relationship,
- Communicate the Opportunity that is borne out of the Vision, and then…
The room buzzed as we participated in various exercises to see how these four steps could be accomplished and then it buzzed even louder as the group put it into action. The Spare a Rose campaign is coming up again and ideas on how to kick it into high gear whizzed around. People threw out suggestions while others grabbed those suggestions, saying: “I got it.” It was electric. Magical. Inspiring.
That’s what happened at the meeting when the advocates there talked to one another.
As all of this was happening, I got introspective (and apparently my face looked “vexed”, according to Kerri). My head veered into a dark space, where I recognized that while I have no problem with “the Ask”, I completely and utterly suck at the Relationship part of the equation.
When I worked into an office environment, my staff knew that they didn’t need to couch their requests or build up to what they wanted. When they knocked on my door, they were ready and fired away. That’s how I liked it. We were all busy and they knew that I trusted them to get stuff done, so if they needed something from me, they got it (if it was reasonable and within my power). I’ve been told that I can be assertive and a bit abrasive. My filter to social niceties can be warped at times.
It’s not always like that in the world, of that I know. For as forward and raucous as I can be with my friends, I’m not big on small talk and feel awkward in some social settings. (In fact, it happened at the forum. There were people I wish I had gotten to know better, but I flunked the “put yourself out there” portion and missed a lot of opportunities.) I’d much prefer to be plunked on a stage in front of hundreds of people, as I’m more comfortable sharing and baring my soul (and my requests for help) when I don’t have to look into the eyes of the other person.
So, my answer to the question about what I can as an individual to help the community as a whole is to work on the Relationship building. I’ve got to reach out and connect with other advocates, people in the diabetes space, and government. It’s a scary proposition and challenge for me and one I know will take a lot of effort on my part. But it’s worth it if building a relationship helps the community as a whole.
Every single person who attended the Medtronic Diabetes Advocates Forum is talented and extraordinary, including the members of the Medtronic Diabetes team. It’s my hope that as we build relationships with each other to create a groundswell for diabetes advocacy, we build friendships and learn from each other as well. I couldn’t do any of this without the inspiration and support from the entire community and the champions that sat in the room (and many of those who were virtually there).
Asking is easy for me, so I’m asking this from you: Help me learn how to build strong, lasting relationships that can help this community be a undeniable force.
(And help me achieve better blood sugars. Wait. Is that asking too much?)