Blog Entries With Tag: JDRF


Posted: Nov 2, 2013

dictionary spelling of di-a-be-tes

Hmmm, I've been seeing various places within the DOC (diabetes online community) going on about this being some celebration of diabetes month (NDAM). 

Yuppers, glancing at my calendar on my wall - THIRTY days of advocating in many different forms about my disease I've had for almost 1/2 a century.  Boy oh boy - do WE feel special or what?  

JDRF 2013 NDAM logo

On further research (gotta love search engines) - I discovered that in the United States - Mr. Obama has declared that it indeed is true. JDRF Canada has as well -along with ADA (American Diabetic Association).  I was even surprised after abit of sleuthing that the CDA (Canadian Diabetes Association) website that they have as well!   I could probably post more - perhaps from other parts of the world - but I'll leave that up to you to let your fingers do the walking across your keyboard (and if you find any good ones - post them here).

Everyone has their different approach to how to celebrate.  I have to admit one of my favs has always been the Lee Anne Thill's World Diabetes Day Post Card Exchange (details can be found at the bottom of this blog for 2013).

A new one I've come across this year is well known American advocate/blogger Kerri Sparling's of Six Until Me - Diabetes Month Photo-A-Day project.  I always like to take pictures (have mobile - will click) - so you'll either see those pics posted here at Diabetes1.org OR my Blogger site - The Roller Coaster Ride of Diabetes.  All depends on how many projects I get involved in (I mean - there is a life outside of diabetes - right?)

So - what will you be doing this month to tell the world about diabetes?  I can't wait to see - but remember - awareness and advocacy isn't just a once a year thing.  It's all the time for many of us that advocate / educate. 

Remember though - if a person's eyes start to glaze over as you yammer on - retreat - some of what you'll have said will enter into their already over-logged brains - and hopefully they'll walk away with abit better understanding of what diabetes is all about!

Little child crying shut the F up

 

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Posted: Apr 14, 2013
I had my birthday last week, and the way I celebrated it was to attend a JDRF Symposium a few hours drive away from my home here in Quebec in the province next door, Ontario.
 
What a blast – being with others that are wishing  to find a CURE* for T1D's (Type 1 Diabetics). What I found the most interesting, that at this symposium they were discussing research aimed at older T1D’s  –  not just the younger ones which has always seemed to be the research topic discussions in the past at the symposiums I have attended over the years.  They are looking ahead – at those of us who were young T1D’s at some point in our life (I was diagnosed in the 60’s) – and living our lives to the fullest with all the new research and innovations – while we wait for that CURE.

Doctor Irene Hramiak from the University of Western Ontario (UWO) was the research doctor that night who presented her role in a  project called REducing With MetfOrmin Vascular Adverse Lesions in Type 1 Diabetes (REMOVAL).  The aim is to test whether 3 years treatment with metformin added to insulin therapy to reduce thickening of the arteries and prevent cardiovascular disease in T1 diabetics.  Heart disease is one of the many problems that diabetics can develop over the years due to the ups and downs of our blood sugar and diabetes control – not all of us can attain a purrfect  4.5-6% A1C that a non-diabetic has.

The study will be monitoring the thickness of the arteries in the neck, which is a marker used to predict the risk of future heart attacks and strokes (and yes, while she was talking about this, I was touching my fingers around my neck).  Also, the study will test the drug’s effects on the control of diabetes and treatment.  One of the small drawbacks of the recepient being on the actual Metformin maybe stomach discomfort and/or diarrhea (which one of my Ottawa friends who is going on this project says might help them lose weight as well as get better control of their A1C).

For those that do partake, of course they'll either be on the drug or they won't, and will be clossely monitored to ensure that they stay in good control (that would be my greatest concern as a test guinea pig).  The criteria fo taking part in this tudy is that you have to be over 40 years of age, had diabetes for more than 5 years or more, with an A1C above 7% but under 10%.  There is other criteria in order to take part in this trial which you can find at this link.  Note that this trial is being conducted in the UK, Australia, Denmark, and the Netherlands and they maybe recruiting as we speak (for Canadians - the deadline is rapidly approaching for participants as they hope to start in the next few months). 

Art made of syringes by Dana Heffern
*
When I posted about attending this symposium last week on Facebook a few long time T1D's like myself got their feathers a wee bit ruffled (very attractive to a bird loving cat like myself I might add). They were disillusioned by JDRF's  promise of “a cure will be found in 5 years”.  That is perhaps an old statement they used many moons ago but so far over the years I've attended JDRF symposiums there are no longer make promises made like that.  JDRF's goal all along has been to, and I quote - " improve the lifes of every person affected by T1D by accelerating progress on the most promising opportunities for curing, better treating, and preventing the disease.
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From:

Posted: Oct 3, 2012

It was the first week of the school summer holidays in 2009. Francesca was 6 years old. She had been feeling (what we thought was) under the weather for a couple of weeks. She was very tired but it was the end of the school year and she had been very busy with various things, so we put it down to that. She was also drinking vast amounts and going to the toilet a lot, which didn’t seem surprising, given the amount she was drinking

One morning, she woke up considerably worse so my wife took her to the doctor with a written list of symptoms so she didn’t forget any. The doctor didn’t seem unduly concerned and told her to take Francesca to the hospital for a blood test. It was too late to take her that day and we had no idea how urgent it was, otherwise we would have taken her to A&E. We took her to the hospital the next morning for the blood test. Francesca was so weak by then that I had to carry her from the car to the phlebotomy department. The nurses struggled to get blood from her and seemed very worried. I thought for a moment that they would fetch a doctor or take us to A&E. In the event, they took her sample through for analysis immediately. Less than an hour later, after I had gone to work, my wife received a phone call from one of the doctors at our surgery. He told Claire to take Francesca to hospital immediately. When she said she couldn’t as she didn’t drive and it would take me possibly half an hour to get home, the doctor said “She needs to go to hospital now so I’ll call an ambulance. Please pack an overnight bag. “She rang me and I raced home but they had already gone to hospital. I raced there and arrived to see Francesca on a bed with lots of tubes attached to her. We were told her fingers and toes were cold and this meant that her body had started to shut down. We had got her there just in time. 

After spending a few hours in A&E, she was transferred to the children’s ward and put in her own room. Later that evening, the paediatrician decided to transfer Francesca to the High Dependency Unit at the bigger hospital in Coventry in case her condition deteriorated so that she was already where she would need to be. She was transferred by ambulance under blue lights. Fortunately, she didn’t get any worse and was transferred back the George Eliot Hospital in Nuneaton the next day.

While she was there, we began the daunting process of learning what we needed to do for Francesca; blood tests, insulin injections etc. There was an enormous amount of information to take on board. We met with the diabetes nurses (who we would see a lot more of in the years to come) and the dietician, all of whom were full of advice.

After spending five days in hospital, Francesca was considered well enough to be released, much to her relief. We left the hospital loaded with books, sheets of information and lots of the medical equipment that would become part of our everyday lives.

A few months later, in February 2010, Francesca was dealing really well with everything but we were starting to worry about our five year old son, Jacob. He started showing the signs of type 1 but a blood test and a urine test were both clear. However, one evening when we were doing the necessary with Francesca, Jacob asked to be tested. The meter read ‘hi’. Off to A&E we went, complete with overnight bag, and our worst fears were confirmed. It was a heartbreaking moment for me when he looked up at me and said, “Am I diabetic too, Dad?” Because recognising the symptoms had helped us to have him diagnosed much sooner than Francesca, he was only in hospital for one night. The doctors wanted to keep him in longer as his BM’s were still too high, but we felt we knew what we were doing by now and he was upset at the thought of staying in hospital another night, so we took him home.

Night-times can be difficult to predict or monitor, and children with type 1 have died in their sleep because their blood sugars go so low without them knowing, so one of us gets up in the middle of the night every night to check their BM’s.

This is why we need to find a cure for type 1. Naturally, I wan5t to do my bit to raise funds for the JDRF. I am involved in a project for World Diabetes Day.

Mums of type 1 children made a video called ‘A Mother’s Anthem’ which you may have seen. The suggestion was made for a Dad’s version. I decided to take up the challenge and saw the potential for a song. The lyrics are from the Dad’s perspective.

The song is about to be recorded and produced professionally with the help of an acquaintance of mine who is in the business, who is also finding a good singer. There will also be a video which is in the process of being made.

The song will be available as a download and (hopefully) a CD single as well. All funds raised will be donated to the JDRF. It will be released to coincide with World Diabetes Day on 14th November.

Watch this space to find out where you can buy it.

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Posted: Apr 17, 2012



Katia is an amazing young woman that I met on the weekend at the Montreal JDRF Research Symposium..  She's currently at Concordia University here in Montreal completing a Bachelor of Fine Arts degree.  In the meantime, with her busy life, she managed to produce a documentary that takes place over 4 years.  It shows the highs and lows of herself and other teens dealing with their Type 1 diagnosis and was filmed in Canada/USA and Ecuador.


She was sweet 16 in 2007 when she received the diagnosis of diabetes.   Of course, it was devastating to her to discover that she was diabetic (who isn't?), and she went into abit of a slump dealing with how it was going to affect her life.  It was something she knew that she could never get rid of and she decided that the best way to accept it was to take control of her life and one of those steps I feel was working on this project - which when you see the clip - you will be anxiously awaiting for the release of it next month.

She is quite the adventurous gal (she's like my D-twin) - in the way she takes life to the fullest.  Just within a year of diagnosis - she went to Europe by herself for 4 weeks - and discovered that nothing could stop her from doing what she wants to do in life.  Her next adventure was in the summer of 2010 at the age of 19 - she volunteered at the FUVIDA camp in Ecudaor - and she's now done this twice - and hopes to return again this summer.  Despite knowing very little Spanish - she managed to help others there with their diabetes. 

One part of her speech really perked my interest was the Austalian group called Insulin For Life (IFL) - along with the Diabetes Hands Foundation (DHF) provides insulin at the camp in Ecuador.  According to Neil Donelan of IFL - 10 million vials of insulin are produced every year and sadly 1 million vials go to waste.  That left me so angry - hearing this - and of course - as I discovered a few years ago - Banting never wanted insulin to be a money making drug - he wanted it available to EVERYONE that needed it to stay alive with diabetes.  Sadly, this is not the case, as other countries outside of Canada saw the money making potential (sigh) - and now - those of us who are unable to obtain insulin suffer - without insulin - we die.

I can tell that she has a very supportive family - as they were in attendance at the JDRF symposium - something I sort of envy since in my days - groups like this were very rare - and I'm not even sure if my parents would have joined up - since diabetes didn't seem to be a serious thing that I had (or that's the impression I get sometimes).  Seeing all the families at the JDRF events really gets me all pumped up - with meeting up with kids - showing them that you can lead a great life with diabetes (and yes - it's not always rosey - but what life is - that's what living is all about).

Anyway, I see great things for her future - she laughed when I told her that she could be our Prime Minister one day - to her - film making is all that she wants to do in life - but like I told her - you never know - I mean Arnold Schwarzenegger has done a few things in his life time besides flexing his biceps !

 

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Posted: Mar 4, 2010


Jesse Alswager -

 

Jesse  Alswager who has had diabetes for 10 years since the age of 3 made a video for a school project back in January of this year.  He has been an inspiration to many young diabetics (and older ones like myself) and between all of that, he is involved in both music and sports. His advocacy has brought him to Washington, D.C. where he spoke before Congress and was honoured for his stem cell research advocacy by Governor Doyle during a State of the State Address.   


Sadly he passed away on February 3rd, 2010, shortly after the video was made due to complications of DKA (Diabetic Ketoacidosis).


It has shocked alot of PWD's, as Jesse and his Mum, Michelle Page-Alswager were (and still are) very involved in the diabetic community.  They raised money for finding a cure for diabetes, through JDRF Ride For Cure and various other organisations.  They basically declared war on diabetes!  Eventually Michelle got into cycling,which proceeded to her becoming a triathlete, then onto Ironman. She came up with the idea of a Type 1 diabetic triathlon team, and a documentary about how they could train for and complete an Ironman started off Triabetes.


To read more about Jesse go to Michelle's website at - http://triabetesdocumentary.blogspot.com/


Jesse you will not be forgotten - we will continue to declare war on diabetes and find a cure!


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