Does Diabetes Need an Ice Bucket Challenge?

Email this to someoneTweet about this on TwitterShare on Facebook18.6kShare on Google+6Pin on Pinterest4

IceBucket Challenge

If you don’t know what the ALS Ice Bucket Challenge is, you may just have returned from a trek to the tundra. And if you have yet to do the challenge, you may just be the Pope. (But be ready, Pope: Shakira challenged you.)

The Ice Bucket Challenge is a social media sensation that started in Boston, where a young former athlete with ALS challenged five friends to dump buckets of ice over their heads and donate a small amount to ALS research, or not to dump and donate more.

From there, it went more than viral. Millions have taken part. And while many may not “get it” or may not have donated, donations to ALS this quarter are in the $40 million range and growing. (Nearly $20 million came in just one day) Last year? The total in this time was about $110,000. 

The Ice Bucket Challenge combines celebrity (Boston pro athletes and movie stars were drawn to the story of a former Boston College athlete battling it; once those celebs went at it, more did), hot summer fun (everyone wanted to dump iced water over their heads), our hyped up online community where everyone wants to make a splash, and “sex appeal,” (starter and ALS patient Pete Frates and his wife, expecting their first child, are downright beautiful on the inside and the outside.) All those things combined for the perfect storm of PR and awareness. And good for them.

It is total rock-star worthy grass roots-at-its-best stuff. It makes use of all the “tools” the world loves today; Facebook, YouTube, and more, and it uses them in maybe the best way most have ever seen. As someone who has long been involved in both advocacy and fundraising, I’m going to say it knocked my socks off.

It’s understandable, then, with the incredible attention the ALS Ice Bucket Challenge is getting for those of us in the diabetes community to be in awe, to be inspired and okay, to be a little jealous. After all, ALS is getting a boost like we’ve never seen before.

So you might be surprised by what I’m going to say here: I don’t think the diabetes community needs an ice bucket challenge. At least not right now. Nor do we need a spin off challenge of any kind.

Some diabetes community folks might not like me saying this. Right now, in this moment in time, ALS might just need it more than we do. (Disclaimer: ALS has touched me personally in the past year. Here is my story.)  ALS is a barely-understood, horrible disease with little advocacy, or research. Curt Shilling did his part back in 2004 when he wrote “K-ALS” on his bloody sock during the world series. But other than that, not much has gone on. 

Then comes this Ice Bucket Challenge, which started literally down the road from me. And really, some of it was just “luck” for the ALS folks (I hate using the word ‘luck’ here, but you know what I mean.)

And we don’t need to take any of that from them.  Online and in person I encounter diabetes folks saying, “We need a challenge!” One mom started a “pie in the face” thing. Another suggested a “five finger prick challenge”. Some others suggested having people do the ice bucket and ask for awareness of ALS and diabetes, and donations to both. 

That all feels wrong to me, and to my daughter, who has battled Type 1 diabetes for 17 years. “Mom,” she said to me today, “Why can’t our community be thankful another community is having success? Why isn’t that enough?”

It should be. And it has been before. Because like all good neighbors, the diabetes community has looked out for other communities in the past. Take 9/11. From the moment the towers came down, it was clear to those of us advocating and fundraising for a cure for diabetes that it was not the time to push that. And so we held back for a time and let charities help victims and their families. It meant a pretty hefty drop in donations to some diabetes charities that year but you know what? In the long run, it meant an increase. Because our “neighbors” appreciated our sensitivity and support.  A few weeks ago, for example, I was speaking at an event of a major company that supports JDRF. An executive said one of the big reasons he is so passionate about JDRF is because JDRF was so passionate about that company’s loss of employees in 9/11. “I knew then you guys were the good guys,” he told me.

And after the Boston Marathon Bombing, we all had to step back and do for others as well. Why? Because it is what our world needed at the time. And sometimes, someone else’s pain or situation trumps ours.

Even when we have diabetes.

We have far to go in the diabetes world. We always need more awareness. And while we fund hundreds of millions of dollars of research annually, we still need to fund more. But things are better, way better. We now have meters covered by insurance. We have a few types of insulin to choose from. We have CGMs. Smart pumps are in clinical trials. A trial for “encapsulated islet cells” is about to start. And our life span is officially longer. So long as we get the care we need and work hard every day, our lives with diabetes will be as long as the lives of people without diabetes.

So let’s keep doing what we do so well in the diabetes world: walk, ride, dance, juggle, whatever, and help fund whichever diabetes organization it is that jazzes you. And remember, the time will come again when we are the community in great need. Perhaps a final push to get approval for a better treatment, or legislation needed to allow some kind of research. 

November, Diabetes Awareness Month, is right around the corner. And when that time comes, as good neighbors, I’m sure the ALS community will be here for us.

 


Moira McCarthy
Moira McCarthy
 was pursuing her dream career in active sports journalism when her young daughter was diagnosed with Type 1 Diabetes in 1997. While she continued on that route, writing for the New York Times Sports and Leisure Division, Snow Country Magazine, Ski Magazine and becoming a daily newspaper sports columnist for the Boston Herald, she also began dedicating much of her life to diabetes advocacy and education. Author of the best-selling “Raising Teens With Diabetes: A Parent Survival Guide”, and “The Everything Parent’s Guide to Raising Children with Diabetes,” she is a long-time JDRF volunteer. She chaired JDRF’s Children’s Congress, was National Chair of Advocacy for three years and National Chair of Outreach, and was named the 2007 JDRF International Volunteer of the Year. She speaks national about raising children with diabetes and thriving in that life. Her daughter, who graduated college in May of 2014, is her proof that people certainly can. 

 

 

Email this to someoneTweet about this on TwitterShare on Facebook18.6kShare on Google+6Pin on Pinterest4

Comments (51)

  1. Completely agree, Moira. What I would like to see is the Diabetes Community embrace the ALS Ice Bucket Challenge as a community, simply in the name of helping the ALS Community. Kind of like we want collaboration between organizations and companies for the betterment of a health condition, other disease states should be willing to do the same for each other and support these kinds of efforts. It’s not about us, it’s about them — and we can help, using our own collective community voice to rais more awareness for ALS. Thanks for writing this.

  2. Completely agree, Moira. What I would like to see is the Diabetes Community embrace the ALS Ice Bucket Challenge as a community, simply in the name of helping the ALS Community. Kind of like we want collaboration between organizations and companies for the betterment of a health condition, other disease states should be willing to do the same for each other and support these kinds of efforts. It’s not about us, it’s about them — and we can help, using our own collective community voice to rais more awareness for ALS. Thanks for writing this.

  3. Kim at

    Thank you. Yes, a million times yes.

  4. Kim at

    Thank you. Yes, a million times yes.

  5. While I completely agree with the sentiment here and that we need to celebrate the success of ALS and their amazing campaign,  I can’t help but notice that there is a paragraph in the article about all the technology we have and that life span can be the same as a person without diabetes. This simply isn’t true in large portions of the world where people struggle due to lack of access to medical care, insulin and supplies. This even happens in the usa and the diabetes community is way too complacent about it, and even often ignores it all together. I know this sounds wasn’t the main point of your article but it’s something I’m passionate about and feel that it should be a priority for people in the diabetes community.  We were lucky enough to be born in a place where health care for people with diabetes is affordable and accessible,  but what about everyone else? That cause is certainly worthy of a challenge or big campaign. 

  6. Rose Edward at

    I lost an Aunt to ALS and my Dad has the biomarkers.  Though my Aunt was an RN married to an MD there was no surviving ALS.
    Though I sympathize with those who desperately want the same success at awareness and fundraising regarding Type 1 Diabetes, the timing has to be right to pull it off well.  Now doesn’t appear to be that time.  Having my only child develop Type 1 has taught me that we must all lend a hand, an ear and sometimes a voice to our cause. Right now though we need to lend a heart to those ALS advocates who deserve their success. 

  7. Matt Fischer at

    Agree 1000%. You are so right Moira, and Mike’s comment hits the nail on the head. Congratulations to the ALS community for doing what every similar community only dreams about doing. To me the pie in the face, finger prick, etc. ideas wouldn’t have any real success, and worse would make us look like sore losers haplessly trying to latch on to the success of others. I’ve been a type one for almost 30 years but I did the ice bucket challenge and donated money to ALS, not just in my name but in the names of my kids who also did it. I may be a T1D, but I’m also a person who has compassion for people dealing with things I fortunately don’t have to.

  8. Scott E at

    Right on! We don’t need to steal the thunder of another organization. We don’t even need to try to grab a piece of it. This is ALSA’s thing, and this is the time for people to learn what ALS is all about (I’m pretty confident there are more folks out there who have never met a person with ALS than who have never met someone with diabetes). They’ve got a good thing going, and they deserve the spotlight right now. And I’ll stand patiently on the sidelines (albeit shivering and soaking wet) supporting them. 

  9. Scott E at

    Right on! We don’t need to steal the thunder of another organization. We don’t even need to try to grab a piece of it. This is ALSA’s thing, and this is the time for people to learn what ALS is all about (I’m pretty confident there are more folks out there who have never met a person with ALS than who have never met someone with diabetes). They’ve got a good thing going, and they deserve the spotlight right now. And I’ll stand patiently on the sidelines (albeit shivering and soaking wet) supporting them. 

  10. Michelle B. at

    As a T1D Mom, I couldn’t be happier for the ALS community. There is a reason this miraculous event happened!! There is a reason it has been brought into the national spotlight… and that reason will benefit ALL OF US IN THE WORLD FOR THE BETTER!  THIS is what the world needed to see… and hopefully will also see the benefits of a sucdessful movement, a well-deserved charity AND a chronic illness being given the chance to be researched and cured on the level it needs to do so!  Blessings to all ALS victims and their families.  We support you and stand with you in your fight while we watch your prayers being answered every day as the tally for better management, drugs, research and cure funding keeps rising!  This is the kind of world I always knew we could be!!   Great article!!! SPOT ON MAMA!!!
     

  11. Michelle B. at

    As a T1D Mom, I couldn’t be happier for the ALS community. There is a reason this miraculous event happened!! There is a reason it has been brought into the national spotlight… and that reason will benefit ALL OF US IN THE WORLD FOR THE BETTER!  THIS is what the world needed to see… and hopefully will also see the benefits of a sucdessful movement, a well-deserved charity AND a chronic illness being given the chance to be researched and cured on the level it needs to do so!  Blessings to all ALS victims and their families.  We support you and stand with you in your fight while we watch your prayers being answered every day as the tally for better management, drugs, research and cure funding keeps rising!  This is the kind of world I always knew we could be!!   Great article!!! SPOT ON MAMA!!!
     

  12. Marissa at

    I agree with this and I don’t.  I agree that there needs to be more awareness for ALS.  It is a horrible disease and this has been fantastic for raising awareness and advocacy and furthering the research for treatments and possible cure.  I would never want to take a single penny away from what has been raised with this challenge for ALS.
    Here is where I disagree (if you could call it disagreeing).  I hope this comes across in the right light, because I’ve never felt adept at expressing myself well onine.  If you look at the origins of the ice bicket challenge, it was for the person who was taking the challenge to pick the charity of their choice.  Some celebrity or another would take the challenge and say which charity they were doing it for and nominate someone else to do the same.  It just happened to get big and go viral for ALS.  I know many people who were tagged or nominated to do the challenge and they posted their video and never took the time to learn a thing about ALS and some didn’t even donate.  They just rode the train of what is trending.  
    I’ve now been tagged or nominated or whatever by my brother to take the ice bucket challenge.  And I’m choosing to do it with a $10 donation to ALS and a $10 donation to JDRF.  T1D is my daughter’s fight and the cause nearest to my heart and I don’t think there is anything wrong with doing the ice bucket challenge as it originally started and pick my charity.
     

  13. Marissa at

    I agree with this and I don’t.  I agree that there needs to be more awareness for ALS.  It is a horrible disease and this has been fantastic for raising awareness and advocacy and furthering the research for treatments and possible cure.  I would never want to take a single penny away from what has been raised with this challenge for ALS.
    Here is where I disagree (if you could call it disagreeing).  I hope this comes across in the right light, because I’ve never felt adept at expressing myself well onine.  If you look at the origins of the ice bicket challenge, it was for the person who was taking the challenge to pick the charity of their choice.  Some celebrity or another would take the challenge and say which charity they were doing it for and nominate someone else to do the same.  It just happened to get big and go viral for ALS.  I know many people who were tagged or nominated to do the challenge and they posted their video and never took the time to learn a thing about ALS and some didn’t even donate.  They just rode the train of what is trending.  
    I’ve now been tagged or nominated or whatever by my brother to take the ice bucket challenge.  And I’m choosing to do it with a $10 donation to ALS and a $10 donation to JDRF.  T1D is my daughter’s fight and the cause nearest to my heart and I don’t think there is anything wrong with doing the ice bucket challenge as it originally started and pick my charity.
     

  14. pepper at

    I agree dont take als thunder however november is diabetes awareness month and i think something needs to be done during the month of november to bring awareness. My nephew is juvenile diabetes type 1 i never was fully aware of what it was or actually all that is inteled with the disease until he was diagnost…i think there should be something done to raise awareness and donations to jdrf to find a cure

  15. pepper at

    I agree dont take als thunder however november is diabetes awareness month and i think something needs to be done during the month of november to bring awareness. My nephew is juvenile diabetes type 1 i never was fully aware of what it was or actually all that is inteled with the disease until he was diagnost…i think there should be something done to raise awareness and donations to jdrf to find a cure

  16. Garry at

    No need to steal ALS thunder about a disease that is terrible.  All diseases out there are terrible, ALS, heart problems, diabetes, cancer, whatever, lest do our part to help when and where we can. 

  17. Garry at

    No need to steal ALS thunder about a disease that is terrible.  All diseases out there are terrible, ALS, heart problems, diabetes, cancer, whatever, lest do our part to help when and where we can. 

  18. Lynn O'Connor at

    Rather than wasting precious water, why not make it a different challenge, like cracking an egg on one’s head. Or doing something not wasteful, like doing the ‘tree’ yoga pose and hold for as many seconds as one can do.

  19. Lynn O'Connor at

    Rather than wasting precious water, why not make it a different challenge, like cracking an egg on one’s head. Or doing something not wasteful, like doing the ‘tree’ yoga pose and hold for as many seconds as one can do.

  20. Catherine Sweet at

    Diabetes DOES NOT NEED THIS CHALLENGE it is turning into a joke with people and is becoming shameful with stupid people.  Come up with your own challenge that wont become a joke. i am sorry. i am sorry but i can not be jealous of anything that is helping others.  i have been a diabetic for 43yrs got it at 9 mths old.  i have seen alot but no one will ever really realize anything till it happens to them or a family member they care about. sorry but there are people that just wont understand.

  21. Catherine Sweet at

    Diabetes DOES NOT NEED THIS CHALLENGE it is turning into a joke with people and is becoming shameful with stupid people.  Come up with your own challenge that wont become a joke. i am sorry. i am sorry but i can not be jealous of anything that is helping others.  i have been a diabetic for 43yrs got it at 9 mths old.  i have seen alot but no one will ever really realize anything till it happens to them or a family member they care about. sorry but there are people that just wont understand.

  22. Helmsmichelle@yahoo.com at

    I think it should be something like 50 Jump-in-jacks or push-ups
    inteaded of Waterw.
    Get America Moving  

  23. Helmsmichelle@yahoo.com at

    I think it should be something like 50 Jump-in-jacks or push-ups
    inteaded of Waterw.
    Get America Moving  

  24. kathy at

    I have posted not to call my name out. I will not do it cause 1 it is just like the Starbucks. It has gotten way to far from the truth. ALS is not a joke. I feel that is what is going on. 2  I have a bad heart and it could kill me. 3 water is very scares I will not waste it.   

  25. kathy at

    I have posted not to call my name out. I will not do it cause 1 it is just like the Starbucks. It has gotten way to far from the truth. ALS is not a joke. I feel that is what is going on. 2  I have a bad heart and it could kill me. 3 water is very scares I will not waste it.   

  26. Nathan at

    Yes let’s do it I wl do it 🙂 

  27. Nathan at

    Yes let’s do it I wl do it 🙂 

  28. Amy at

    My husband is T1D and has been for over 40 years, so yes, I’m a little jealous. But I couldn’t agree with you more.  It’s their time and I’m enjoying watching so many people help support and raise awareness for the cause.  Many people I know are being reminded by the challenge to donate not only to ALS but also whatever other causes they like to support. I have a strong suspicion that other organizations (not ALS related) have benefited from the ice bucket challenge. 

  29. Amy at

    My husband is T1D and has been for over 40 years, so yes, I’m a little jealous. But I couldn’t agree with you more.  It’s their time and I’m enjoying watching so many people help support and raise awareness for the cause.  Many people I know are being reminded by the challenge to donate not only to ALS but also whatever other causes they like to support. I have a strong suspicion that other organizations (not ALS related) have benefited from the ice bucket challenge. 

  30. Karen Davies at

    I totally agree, but i think we should be brainstorming NOW a similar attention grabbing gimmick for TYPE1 in November. One that doesnt waste an already depleated natural resource! !!

  31. Karen Davies at

    I totally agree, but i think we should be brainstorming NOW a similar attention grabbing gimmick for TYPE1 in November. One that doesnt waste an already depleated natural resource! !!

  32. Dianna Inkster at

    ALS manifests itself very visibly shortly after diagnosis: type 1 diabetes hides because the patient seems well.  Perhaps better than ever–he or she has given up smoking, drinking, eating poorly.  He or she is well managed and less quarrelsome and happier.  However, damage is still being done.  I’ve had to tell people my husband is very, very sick and needs constant care.  They argue with me about that when I meet them shopping.  When we part not on the best of terms, I guess, they have a shocked look on their face or write me off as a party pooper. 

  33. Dianna Inkster at

    ALS manifests itself very visibly shortly after diagnosis: type 1 diabetes hides because the patient seems well.  Perhaps better than ever–he or she has given up smoking, drinking, eating poorly.  He or she is well managed and less quarrelsome and happier.  However, damage is still being done.  I’ve had to tell people my husband is very, very sick and needs constant care.  They argue with me about that when I meet them shopping.  When we part not on the best of terms, I guess, they have a shocked look on their face or write me off as a party pooper. 

  34. Erika at

    Thank you.

  35. Erika at

    Thank you.

  36. Bob at

    How about a whipped cream pie in the face???
     

  37. Bob at

    How about a whipped cream pie in the face???
     

  38. Kathy at

    I agree a 100%
    I wish I came up with the ice bucket idea (or that I will come up with something as clever) but no, we should not copy that. Perhaps we need to put our brains to work on something that will draw attention and donations. Honestly I think people already had it with the ice bucket thing. That being said I am happy for ALS

  39. Kathy at

    I agree a 100%
    I wish I came up with the ice bucket idea (or that I will come up with something as clever) but no, we should not copy that. Perhaps we need to put our brains to work on something that will draw attention and donations. Honestly I think people already had it with the ice bucket thing. That being said I am happy for ALS

  40. Jonathan M Lloyd at

    Completely agree. Taking the high road, I see. That’s a nice place for all of us to be.

  41. Jonathan M Lloyd at

    Completely agree. Taking the high road, I see. That’s a nice place for all of us to be.

  42. MARK at

    I appreciate your point of view on this. I’m not quite sure of my own, just yet. My father died of ALS. My wife and son are T1Ds. I haven’t done the ice bucket challenge and haven’t been inspired to donate either. I actively fundraise and advocate for T1D funding.

    I view things through the following practical lens:

    1. T1D doesn’t need a fad fundraiser — we have taxpayer supported research initiatives that are driving toward a cure or vastly better management. We also have a rich tradition and broad network for fundraising. Also, the disease affects children in recognizable ways — quite simply, diseases that affect children need less “help” gaining attention and sympathy.

    2. T1D affects WAY more people and costs us collectively WAY more money — directly and indirectly (lost productivity) — than ALS does. In the most utilitarian sense, T1D is a better investment.

    3. T1D is reasonably close to a cure. In terms of investment value, this one is much more likely to pay off.

    4. Investment in T1D research will accrue to other autoimmune diseases, including many that are orphan diseases (that don’t have funding streams).

    5. T1D’s manageability is real but deceptive. Way too many deaths from hypoglycemia. Way too few T1Ds in adequate control. The disease is way too difficult for many to master (in a world where science literacy is weak).

    6. ALS is hideous, plain and simple. In fact, the frolicking and fun of the ice bucket challenge is a bit stomach-turning for me, having watched my dad degenerate and die over the course of 15 months.

    7. ALS is a motor neuron disease and is supported in many ways by the Muscular Dystrophy Foundation, which has been a fundraising powerhouse for decades.

    8. I don’t have a great deal of confidence that we’re all that close to an ALS breakthrough, but I suppose I’m willing to hope. That said, massive influxes of money has often done more harm than good to an organization.

    9. I don’t think ALS needs all that much in the way of awareness, honestly. Just hope it doesn’t hit your family. There’s no behavior to avoid, as far as we know. Honest to goodness, if there were a genetic test to determine vulnerability you wouldn’t want to know if you tested positive.

    10. If we want to TRULY make an impact on chronic and infectious diseases, we need to invest in the smartest, most coordinated way that we can. The good news is that those mechanisms pretty much exist — NIH, best research hospitals and universities in the world, CDC, etc — right here in our country. The good news is also that we have the mechanisms to fully fund and increase funding for that research — budgets, taxes and appropriations. The bad news is that at a time when we need to make progress on these conditions, need to employ more scientists and researchers, and have plummeting annual budget deficits (yes, plummeting…look it up from an objective source) and very low interest rates, our mechanisms and institutions are facing budget cuts and squeezes.

    In the T1D world, we’ve managed to get our $1B of federal funding through, which is great. But to help those afflicted with other diseases and conditions, our best solution is to vote for elected officials who will promise to increase funding for this type of research. It pays for itself in well-paid jobs, as well as ultimately bringing down the cost of disease through treatments and cures.

    I guess that’s my out-loud thinking. I’m proud to be a husband and dad of type 1s. I wish I’d never known about ALS. I’m hopeful that some day in the not-distant future, I will see my wife and son freed from T1D. It’s in sight. We need a big push to get us there. 

  43. MARK at

    I appreciate your point of view on this. I’m not quite sure of my own, just yet. My father died of ALS. My wife and son are T1Ds. I haven’t done the ice bucket challenge and haven’t been inspired to donate either. I actively fundraise and advocate for T1D funding.

    I view things through the following practical lens:

    1. T1D doesn’t need a fad fundraiser — we have taxpayer supported research initiatives that are driving toward a cure or vastly better management. We also have a rich tradition and broad network for fundraising. Also, the disease affects children in recognizable ways — quite simply, diseases that affect children need less “help” gaining attention and sympathy.

    2. T1D affects WAY more people and costs us collectively WAY more money — directly and indirectly (lost productivity) — than ALS does. In the most utilitarian sense, T1D is a better investment.

    3. T1D is reasonably close to a cure. In terms of investment value, this one is much more likely to pay off.

    4. Investment in T1D research will accrue to other autoimmune diseases, including many that are orphan diseases (that don’t have funding streams).

    5. T1D’s manageability is real but deceptive. Way too many deaths from hypoglycemia. Way too few T1Ds in adequate control. The disease is way too difficult for many to master (in a world where science literacy is weak).

    6. ALS is hideous, plain and simple. In fact, the frolicking and fun of the ice bucket challenge is a bit stomach-turning for me, having watched my dad degenerate and die over the course of 15 months.

    7. ALS is a motor neuron disease and is supported in many ways by the Muscular Dystrophy Foundation, which has been a fundraising powerhouse for decades.

    8. I don’t have a great deal of confidence that we’re all that close to an ALS breakthrough, but I suppose I’m willing to hope. That said, massive influxes of money has often done more harm than good to an organization.

    9. I don’t think ALS needs all that much in the way of awareness, honestly. Just hope it doesn’t hit your family. There’s no behavior to avoid, as far as we know. Honest to goodness, if there were a genetic test to determine vulnerability you wouldn’t want to know if you tested positive.

    10. If we want to TRULY make an impact on chronic and infectious diseases, we need to invest in the smartest, most coordinated way that we can. The good news is that those mechanisms pretty much exist — NIH, best research hospitals and universities in the world, CDC, etc — right here in our country. The good news is also that we have the mechanisms to fully fund and increase funding for that research — budgets, taxes and appropriations. The bad news is that at a time when we need to make progress on these conditions, need to employ more scientists and researchers, and have plummeting annual budget deficits (yes, plummeting…look it up from an objective source) and very low interest rates, our mechanisms and institutions are facing budget cuts and squeezes.

    In the T1D world, we’ve managed to get our $1B of federal funding through, which is great. But to help those afflicted with other diseases and conditions, our best solution is to vote for elected officials who will promise to increase funding for this type of research. It pays for itself in well-paid jobs, as well as ultimately bringing down the cost of disease through treatments and cures.

    I guess that’s my out-loud thinking. I’m proud to be a husband and dad of type 1s. I wish I’d never known about ALS. I’m hopeful that some day in the not-distant future, I will see my wife and son freed from T1D. It’s in sight. We need a big push to get us there. 

  44. Indieconch at

    I do not agree that “T1D hides because the patient seems well.” My partner (at 35) lost a tremendous amount of weight (and was eating ALL THE TIME because he was skinny to begin with), went from perfect eyesight to needing eyeglasses, and then, the kicker, he started passing out. THEN his doctors started to run blood tests and found he was insulin resistant and clearly T1D. He was very obviously not well for *years*, and it took his pancreas almost completely pooping out on him to wake up his doctors. EVENTUALLY, his illness was brought to light, and he became informed and now is very well managed, but who knows what could have happened if he’d had earlier screenings when his symptoms first started in the years before his dx?

    I think the ALS bucket challenge *is* a …erm… fun (??) way to bring awareness to the disease and it is bringing in “buckets” of money to raise awareness and fund research and that is AMAZING. I am just hopeful that all the donations being made to ALS does not take away from the donations people could be making to T1D research because “our” community doesn’t have the same viral appeal.

  45. Indieconch at

    I do not agree that “T1D hides because the patient seems well.” My partner (at 35) lost a tremendous amount of weight (and was eating ALL THE TIME because he was skinny to begin with), went from perfect eyesight to needing eyeglasses, and then, the kicker, he started passing out. THEN his doctors started to run blood tests and found he was insulin resistant and clearly T1D. He was very obviously not well for *years*, and it took his pancreas almost completely pooping out on him to wake up his doctors. EVENTUALLY, his illness was brought to light, and he became informed and now is very well managed, but who knows what could have happened if he’d had earlier screenings when his symptoms first started in the years before his dx?

    I think the ALS bucket challenge *is* a …erm… fun (??) way to bring awareness to the disease and it is bringing in “buckets” of money to raise awareness and fund research and that is AMAZING. I am just hopeful that all the donations being made to ALS does not take away from the donations people could be making to T1D research because “our” community doesn’t have the same viral appeal.

  46. Chris Higgins at

    At the beginning of summer, the Cold Water Challenge was going around. You got challenge your friends to jump in a lake,river or pool. Or give to a charity of the challengers choice. Many donations were pledged to T1D.

  47. Chris Higgins at

    At the beginning of summer, the Cold Water Challenge was going around. You got challenge your friends to jump in a lake,river or pool. Or give to a charity of the challengers choice. Many donations were pledged to T1D.

  48. Karen Davies at

    I really like the waking up at 3:00 AM and taking a picture of their view and posting it. For us, we could wake up and take a picture of our child and post. Some parents with non-T1D kids could take a pic of their child and be thankful that they do not have T1. Such a great idea and not wasteful and very meaningful! …this was an idea on Canadian Parents of diabetic children site!!! Great idea!!

  49. Karen Davies at

    I really like the waking up at 3:00 AM and taking a picture of their view and posting it. For us, we could wake up and take a picture of our child and post. Some parents with non-T1D kids could take a pic of their child and be thankful that they do not have T1. Such a great idea and not wasteful and very meaningful! …this was an idea on Canadian Parents of diabetic children site!!! Great idea!!

  50. Megan at

    My brother recently passed away. He had type 1 diabetes. Before passing away, he made this video. His friends, family, and teammates are now trying to carry the “LIV-abetes egg-crack challege” on in his memory.
    https://m.youtube.com/watch?v=fqg3ZvEb6Jc

Add a comment

Your email address will not be published. Required fields are marked *