Challenges for a Cure - Juvenile Diabetes (type 1) fundraising

bennopop · 14-01-2013, 06:51 PM

Hi guys,

My wife and I raise money each year for the Juvenile Diabetes Research Foundation Australia (JDRF). The JDRF is a worldwide organisation funding research into a cure for type 1 diabetes.

Our daughter was diagnosed at 5 with type 1 diabetes (she's now 7). Type 1 is not the diabetes most of you would know of (publicised with images of overweight people while suggesting healthier eating would cure it). That is type 2 diabetes and vastly different.

Type 1 is an auto immune disease. There is no cause, no predicting, no cure and no warning.
It causes weight loss, lethargy and a complete lifestyle change for your (often young) child filled with constant blood tests, insulin injections and carbohydrate counting. Literally everything that goes in your mouth is counted.

Without waffling on too long, we have set up a Facebook page to coordinate our fundraising based upon CHALLENGES!. All fundraising is done via the JDRF's guidelines and websites and no money comes to us. Our aim is to raise funds to one day see a cure for our little girl and so many others.
Hopefully we can boost the number of members so that people can undertake their own challenges via the site to combine some efforts!

Please check out the page if you can, and share with your friends. Although at the moment my wife and I are the ones currently doing the challenges, we feel that will have limited reach so we want to encourage others with like-minds to complete their own challenges.

www.facebook.com/challengesforacure

Cheers, Ben

MFP508 · 14-01-2013, 07:48 PM

have "liked" your page...
Im a 45yo child :P whose just recently found out im a T2..certainly not the same as a T1 especially as a child, but diabetes is diabetes, sadly the only thing i have to look forward to IS becoming T1, though i do my very best to push that time further away..Keep up your great work mate, for you daughter and all the other littlees

bennopop · 14-01-2013, 08:01 PM

Cheers Doug, thanks for the words... yes both are horrible diseases in their own right (and I just re-read my post - I hope I don't offend when talking about type-2 diabetes, I just feel it necessary to distinguish the two types :-) )

Thanks for the encouragement, I hope you are able to share also and perhaps one day issue your own challenge!!

Nice XR6 by the way :-)

Cheers, Ben

MFP508 · 14-01-2013, 09:57 PM

I feel folks have difficulty discussing the version that doesnt affect them, ie T1 or T2 and i feel no anamosity toward anyone who has to cope with these 2 types of diseases and all the other "life changers" out there, let alone have to not mention the other...i guess i couldve said (none taken..lol)

But yes, the lack of public understanding in regards to Type 2 is....wow...the only word i can think of to describe the ways to cure it that ive been told :P

the difference is that T2 is usually bought on by an unhealthy diet to high in fat (me) A healthy diet can reduce body fat and in time bring mmols back to a safe number, but its incurable and is a precursor to T1.

I will, even after years of healthy eating and meds, develop T1 through the natural degradation of my pancreas, liver etc due to the aging process

(In a odd twist, for me, its maybe the best thing that ever happened to me)

bennopop · 14-01-2013, 10:25 PM

That's true, type 2 is defined by a bodies resistance to insulin (in most cases built up over time) whereas type 1 is an inability to produce insulin, triggered as an auto immune responses spontaneously that stops the pancreas producing insulin.

The media fail miserably in defining either type of diabetes. I definitely had no idea the difference prior to my daughters diagnosis.

One of the areas we are keen on is further education in the media - as that is where most people get their information also.

All the best with your treatment! :-)

MFP508 · 14-01-2013, 11:24 PM

Oh Im good now...just need to maintain healthy calorie controlled diet (Lite n Easy)
at my diagnosis my mmol was 18.4 its now 5.8
my cholesterol was 9.7 its now 1.9 both after my 2 blood test 6 months
my weight was 117kg it took a total of 9 weeks to shed 30kg to 87kg now

my67xr · 15-01-2013, 08:27 AM

liked the page too,
i'm a type 1 Insulin dependant Diabetic myself, was diagnosed 29 years ago at the age of 15,
i was told they were working on a cure then, and it was 10 years away.
hopefully with the technology around now, they will be able to do something soon.

i remember hearing a few years ago, by injecting stem cells into the pancreas it can regenerate itself.
iirc, a Sydney guy that was the guinea pig for the tests needed 85% less insulin in 3 days, after having the stem cells injected.
but i've never heard any more about this...

cheers, craig

**Papa Smurf** · 15-01-2013, 11:00 AM

I feel sorry for the little ones who have to inject every day to keep going. It is a sad thing as you know that for the time being, it is what they will have to do for the rest of their lives.
I am a T2 with insulin dependence, I have cellulitis in one leg and an ulcer that defies healing so I do understand. I have liked your Facebook page. Good on you.

350125GO · 16-01-2013, 04:20 PM

I liked the page too, my dog has diabetes!

**supershifty** · 16-01-2013, 06:28 PM

bennopop,

I can't help you out on your FB page as I don't do that kind of social media. I'm more than willing to help out with a donation, as would other members on this forum for this cause.

You would have to get the approval from the chairman/directors to do this - it's well worth the asking. The following link shows forum leaders, ask one of the ones listed in green.

Cheers!

http://www.fordforums.com.au/showgroups.php

Rev28K · 16-01-2013, 09:26 PM

my67XR.

There are a couple of things happening with research. Have a look on some of the T1D forums, there is heaps of info on them. Reality Check is a good one.

They have tried transplanted islet cells wrapped in seaweed and other stuff, the idea is that they aren't attacked by the bodies immune system and can last longer. Another idea is tissue engineering where fat is sucked out of someone and can be re-engineered as muscle, fat or organs like pancreas. The advantage with this is that you don't have to go on anti-rejection drugs like with most transplants (either human or xeno) as the body still recognises it as its own tissue.

Continuous glucose monitoring is getting better and when it is linked to pumps in a closed loop system that will be a big jump forward. "Smart" insulin is another idea, it uses nano-tech. The idea is that you pump a bit in to the body and if it recognises from your BGL's that you have too much insulin on-board then it becomes inert/inactive and you don't go hypoglycaemic.

There are also other ideas with insulin delivery systems and BGM that don't require you to punch a hole in your skin. Things like inhalible insulin sprays and reactive contact lenses that change colour by reading your BGL out of the liquid on your eyeball (the "teary" stuff).

I've been in a room with well-educated, well-informed D's when someone has announced new findings and even though they know pretty much everything that is going on their is a palpable increase in tension and anxiety as everyone hopes that this is "the one". It is an emotional response, not a logical one. The 10 years for a cure was merely good mental hygiene for someone living with a chronic condition. I know endocrinologists who don't use that phrase now or have never used it in the past as it gives rise to false hopes.

When you get down to it if you were given a choice as to when to have T1D now or 29 years ago. You'd have to pick "now" hands down (better insulins, treatment for complications, testing equipment, etc).

Bennopop - there are the occasional good new stories on Diabetes. It takes a lot of patient nudging & prodding, I'd say that there has been an improvement compared to some of the shockers 10 yrs ago. The hardest thing is trying to correct someones opinion of it because they knew a poorly controlled relative or friend that went blind/lost bits/smoked or drank to excess and thought that they were a typical example.

As you can probably tell, I'm pretty close to someone who is a T1D.

bennopop · 17-01-2013, 08:31 PM

Quote:

Originally Posted by supershifty

bennopop,

I can't help you out on your FB page as I don't do that kind of social media. I'm more than willing to help out with a donation, as would other members on this forum for this cause.

You would have to get the approval from the chairman/directors to do this - it's well worth the asking. The following link shows forum leaders, ask one of the ones listed in green.

Cheers!

http://www.fordforums.com.au/showgroups.php

Thanks for the feedback supershifty, I appreciate that. There is a secure site for donations which is here: http://fundraise.teamcurediabetes.org.au/ben_poprawski

If you are able to donate that is most sincerely appreciated - being a fairly ill-understood disease it is often difficult to attract donors outside of your immediate friends and family, so for a total stranger to be so generous is heartening. Thank you.

I have also taken onboard your suggestion and emailed russelw for his feedback.

Quote:

Originally Posted by Rev28K

Bennopop - there are the occasional good new stories on Diabetes. It takes a lot of patient nudging & prodding, I'd say that there has been an improvement compared to some of the shockers 10 yrs ago. The hardest thing is trying to correct someones opinion of it because they knew a poorly controlled relative or friend that went blind/lost bits/smoked or drank to excess and thought that they were a typical example.

Very true, that's why we are so passionate about changing the "state of play" in regard to public knowledge. We know first hand the ignorance out there - WE were the ignorant ones until our daughter developed the disease.

Thanks everyone for your support.

Cheers

bennopop · 18-01-2013, 07:59 PM

Thank you to supershifty for your donation mate - you are a truly generous person and my family truly appreciate it.

Hi everyone else, a quick update based on supershifty's suggestion, I've been in contact with Russell who has agreed to facilitate fundraising by accepting funds on our behalf through this wonderful forum!

Additionally, Russell has very generously pledged to provide an additional $500 on behalf of AFF!

A tremendous gesture that I can't begin to express how appreciative we are of. I had no idea how involved the AFF was until now and its heartening to be part of such a great group of great people.

So there are two ways people can donate to our challenge:
1) via the JDRF secure site @ http://fundraise.teamcurediabetes.org.au/ben_poprawski
Or 2) via the normal AFF charity channels and AFF will forward you donation on your behalf.

And don't forget if you would like to get involved in your own challenges, or suggest challenges for others to take on, please feel free to join our Facebook page at www.facebook.com/challengesforacure

Likewise, if anyone is doing any fun runs or sporting events of their own, and would like to raise some money doing it, let me know as we can help you set up and join the cause.

Thanks guys, if you have any questions on any aspect please let me know. I'll be on here for a while tonight.

Cheers, Ben

bennopop · 24-01-2013, 11:17 AM

*** bumpity***

bennopop · 08-02-2013, 06:17 PM

*bump*

We've raised $1180 now getting closer!!

Cheers.

bennopop · 21-02-2013, 07:17 AM

** bunp** ��

We've started an AFL tipping competition and AFL Fantasy league as well if anyone is interested in winning a few dollars and helping a great cause at the same time?

Check out our page for details - www.facebook.com/challengesforacure - and click on events.

Cheers, Ben

**Papa Smurf** · 25-02-2013, 02:36 PM

Ben, I don't have a lot of money anymore as I am now unable to work because of my illnesses but I will donate to this. I have seen little ones with this horrible ailment and they are stoic and accepting but NO child should ever have to start their life being dependent on a life saving does of insulin.
I struggle with my condition and can go from lows of under 3 to highs of up to 28 but the difference is that I chose the lifestyle that caused this, unlike the little ones.

You have done a great job, you should be commended for all the work you do and for not letting this drop.

I just now donated and the amount raised so far is $1230.00 YAY!

bennopop · 25-02-2013, 07:22 PM

Quote:

Originally Posted by Papa Smurf

Ben, I don't have a lot of money anymore as I am now unable to work because of my illnesses but I will donate to this. I have seen little ones with this horrible ailment and they are stoic and accepting but NO child should ever have to start their life being dependent on a life saving does of insulin.
I struggle with my condition and can go from lows of under 3 to highs of up to 28 but the difference is that I chose the lifestyle that caused this, unlike the little ones.

You have done a great job, you should be commended for all the work you do and for not letting this drop.

I just now donated and the amount raised so far is $1230.00 YAY!

Well mate, that was a truly generous thing indeed; to donate money when it is scarce makes it all the more valuable in my eyes - it means that people out there believe what we are doing is trying to make a difference. I sincerely thank you for that - it's a warming experience.

For anyone else out there who is wanting to get involved, you can join us at any stage.
Our facebook page is www.facebook.com/challengesforacure and there are currently two events being organised (footy tipping & an AFL Dream Team/Fantasy league) where you can enter by donating and a portion going into a prize pool.

Check out the page for details.

Cheers, Ben.

**Captain Stubing** · 25-02-2013, 08:54 PM

Sorry to hear of your plight, I've put a couple of dollars towards your fundraising via Paypal. It's not a lot, but every bit helps.

bennopop · 25-02-2013, 09:02 PM

Hi Swanny
Thanks so much for that! You're right - every bit helps. We've put a tin on our mantelpiece that we've been putting all our coins in over the past few weeks... we'll bank it before the jump and see how much 'every little bit' has managed to grow!

Another generous member of AFF - appreciate all the support!

Cheers, Ben

bennopop · 02-03-2013, 08:22 PM

**bump**

Sammy did a wonderful 'flashdance' in Salamanca Place, Hobart today! Photos will be posted on our page hopefully tonight and you can see the video here:
http://youtu.be/4CkJ0QH2E1M

Our page is www.facebook.com/challengesforacure

Total raised so far:
$1300

We had 4 x 'rattle-tins' today - we opened one, which had just over $40.00 in it. The other three will be opened in a little over a week to see how we went with those!

The footy tipping comp & the fantasy league comp are set to bring in about $250.00 which will put us over $1500!!

Thanks for those VERY generous AFF members who've supported us so far. If anyone else is interested in supporting a GREAT cause you still can - as little as $5.00 is a big help AND tax deductible!

I've also got a flyer that we gave out today - which has some great information about what we're doing & what Type 1 is:
https://skydrive.live.com/redir?resi...BEY0gmh0YHh9kk

Cheers to those who are reading this!

Ben.

bennopop · 08-03-2013, 08:03 PM

**BUMP***
One more week to go!!

Not too late to donate or to join one of our AFL footy comps!

(PS - anyone going to the Top Gear Festival in Sydney this weekend?? Gonna be a corker I reckon!!

)

bennopop · 11-03-2013, 04:50 PM

Wow !

A huge thankyou to Russel & the Australian Ford Forums community for donating $500 to JDRF!

Combined with donations from Supershifty, Papa Smurf and Swanny, that total rises to $630!

A fantastic contribution that is well & truly appreciated! THANK YOU!!

PS - the Top Gear festival was SENSATIONAL......

**Papa Smurf** · 26-04-2013, 01:41 PM

I would like to see this keep going. The way we donated is not the only way and right now, Woolworths are behind the Jelly Baby Month and, of course you can still donate to this as well. This entails buying something useful when you do your shopping at Woolies or Big W. I bought a lapel pin today for $3.00 but they have other things that can be purchased, it's not much to add to the shopping list?

Woolies JDRF Page
and this explains a little more about the whole thing:
JDRF Page

Sorry to steal your Thread Bennopop.

bennopop · 27-05-2013, 08:14 AM

Sorry Papa Smurf, I haven't been back here for a while & I don't get email notifications on new posts! Thanks so much for continuing the post - we need more people like yourself continuing to push awareness and fundraising.

You're right, it is so easy to contribute in our day to day purchases at the moment with Wollies behind Jelly Baby Month.

We're continuing to push the fundraising locally here in Hobart and are hoping to get enough people together to our Monsters University movie screening at Village Hobart. It's a little difficult getting the numbers at the moment, but for a first attempt we're doing OK - just need a few more to get past the 'break-even' point, that way we can continue selling tickets up until the day. If we don't get there by the end of this week though unfortunately we'll have to cancel...

The event this thread was initially started for has now finished, but if anyone does want to donate there are several ways it can be done:
- directly to JDRF via their website
- via the Jelly Baby Month merchandise which is available for a few more days yet
- via the Ford Forums donation mechanisms

Cheers everyone!