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mik
12th February 2015, 01:06
Hi all,
firstly i love the MNDA they have been great for me and my wife. I am just concerned that i have not seen or heard of any of this icb money being put to use at all. Wheres all the awareness campaigns this money could used for, like billboards up and down the country or t.v adverts? What about MND training programs for families and care agencies so they have more insight into what can be expected? What about a specifically trained and employed by the MNDA MND nurse in each county/area?
i just want to see some action, i mean the money was donated to help our families and everyone effected by MND not for the MNDA to sit on.
mik

Trevorhb
12th February 2015, 11:17
They have put a post on Facebook this morning saying their future plans are about to be revealed.

pete
12th February 2015, 12:58
Hi Mik,

I doubt if your alone in wondering what happens to the money given by so many, it's disgusting to let it sit in accounts ,rather than making a difference to someone's life when they need it most, Lord knows we don't get much in the way of treatment, just getting symptom relief as and when it's needed. Let's hope those who do decide have the decency to ask before just announcing what they think is best may well be not how we see it seeing life from our perspective .

Andrew
12th February 2015, 13:06
Hi all,

Apologies - did not see this thread before posting on the forum.

Mik and Pete, understand your frustrations and concerns at the delay in communicating how the money is being spent.

Hopefully it will be clearer by this evening.

Best wishes,

Andrew

pete
12th February 2015, 13:22
Hiya Andrew,

Thanks ,can't wait to see the details.

Pete

mik
12th February 2015, 14:32
thanks trevor, pete and andrew.
i'm very interested to see what the MNDA have prioritised whats best to help us MND sufferers.
mik

Trevorhb
12th February 2015, 20:48
The plans are in a post on Facebook.

Andrew
13th February 2015, 00:02
Hi all,

You can find out more here:

www.mndassociation.org/IBCmoney

Best wishes,

Andrew

mik
13th February 2015, 00:50
thank you andrew.

mik
13th February 2015, 12:50
have read and its a good amount going on research, as long as its viable and promising. why not give some of the £5.1mil to genervon?
i also think that £750,000 is no where near enough money to put towards raising more awareness?
mik

Steve
13th February 2015, 13:28
It must be difficult to have to decide how to divvy up the money. I bet all of us would come up with different outcomes. I think spending the majority on research is a good move because the people who have donated would have expected it to go to that area.

Raising awareness is a difficult one, on the one hand you need to raise awareness to get more donations etc. but it takes money away from research or care. Also it is expensive for a relatively small organisation compared to the 'big boys' like Macmillan etc. You could spend twice as much and not make a dent in public awareness.

Genevron is a funny one, I imagine the assoc want to remain neutral so giving backing to one company could open a can of worms. If it is purely a funding issue there are plenty of high risk private equity investors out there who would jump at something like this given its target market. I suspect they are reluctant to do that as it would water down their potential $.

I've got a feeling i'm going to get flamed for that last para :D

ccinjersey
13th February 2015, 13:47
Hi Andrew

It does raise an interesting question. If the FDA approves the drug GM6 in the US, according to Nicholas Grillo our health insurance companies would have to make payment for those taking the drug.

Would that be true for the UK ? Would your NHS also ensure that those suffering with ALS will have GM6 available to them, and at no out of pocket cost to them, and just as importantly in a very speedy, timely manner ?

CCxox

Steve
13th February 2015, 14:01
Hi Cc

Drug funding in the UK is limited so each drug is looked at individually and assessed. A lot comes down to a cost/benefit analysis.

Andrew
13th February 2015, 14:03
Hi all,

Awareness is second only to research on our members' list of priorities. As Steve says, it is expensive business and although TV advertising is the most visible way to get the message out there, it is also the most expensive and doesn't necessarily guarantee that people will pay any attention.

I would say that the Association is very good at getting 'bang for its buck,' for example the advertising space on billboards used during MND Awareness Month for the past two years has been given at a hugely reduced rate.

Best wishes,

Andrew

Andrew
13th February 2015, 14:06
It does raise an interesting question. If the FDA approves the drug GM6 in the US, according to Nicholas Grillo our health insurance companies would have to make payment for those taking the drug.

Hi CC,

I'm not best placed to talk about this, however I would be happy to speak to our research team and get a fuller response.

I'm aware that several forum members have contacted the team privately (research@mndassociation.org) to ask about Genevron.

Best wishes,

Andrew

mik
13th February 2015, 14:23
hi all,
spending on research is all well and good. but some of that money will be spent on stalled research. That dosent sound good, why would promising research be stalled, if the research just needed money then like you say steve theres plenty of private investors out there? raising more awareness is where you go from being a little organisation to raising the amounts that make you a bigger fish. last year the MNDA got very lucky with the ICB and since then what has been done to build on it? all i'm saying is i dont think enough has or is going to be done to build more awareness.
mik

Steve
13th February 2015, 14:30
I agree there Mik, the research system takes far too long. Too much time is wasted ticking boxes and paperwork.

Jan
13th February 2015, 15:05
more awareness just has to be built upon and particularly upon professionals. Take Joyce's predicament with her shoes as an example where a professional is comparing her situation with that of someone suffering with Parkinsons. The professionals that we with MND need to rely upon need to be educated that today is as good as it gets for us and it is a steady (or fast) downward decline we are on. We don't need to be told that it will take 8 weeks to get the proper aids we need when the need for those aids becomes obsolete within 4 because we have already progressed to the stage where the aid is of no use in any event

Trevorhb
13th February 2015, 15:30
Joyce was going privately Jan.

ccinjersey
13th February 2015, 15:34
Thanks Steve, Andrew for your responses.

It does sound a little unsettling to think if this promising drug becomes available to the Als global community that a drug analysis cost could prevent it from being in the hands of those in desperate need of it. I certainly hope and pray that will not be the case.

The last hopefully accurate dollar amount I read the US raised from the IBC was 80 million!! I also hope GM6 will fall in the category of the 5 million from the IBC being dedicated to Research in the UK, and to all those that want to give it a go.

Nick Grillo and all his supporters are pushing and fighting hard. The money is there now, as well as the hope of a promising drug. Those terminally ill do not have the luxury of time on their side, lets hope bureaucracy will not be standing in the way, and wasting time.

xox

Jan
13th February 2015, 15:46
Joyce was going privately Jan.

in my view she should not have to Trevor

Steve
13th February 2015, 15:49
more awareness just has to be built upon and particularly upon professionals. Take Joyce's predicament with her shoes as an example where a professional is comparing her situation with that of someone suffering with Parkinsons. The professionals that we with MND need to rely upon need to be educated that today is as good as it gets for us and it is a steady (or fast) downward decline we are on. We don't need to be told that it will take 8 weeks to get the proper aids we need when the need for those aids becomes obsolete within 4 because we have already progressed to the stage where the aid is of no use in any event

I agree Jan, when I was referred to Orthotics it was early July, I got an appt mid Aug and got the aids in Oct. In Dec I took the decision to use the chair full time. There should be priority for MND patients, 3 months is too long to wait because in that time our disease can have progressed beyond that piece of equipment.

Steve
13th February 2015, 15:55
Thanks Steve, Andrew for your responses.

It does sound a little unsettling to think if this promising drug becomes available to the Als global community that a drug analysis cost could prevent it from being in the hands of those in desperate need of it. I certainly hope and pray that will not be the case.

The last hopefully accurate dollar amount I read the US raised from the IBC was 80 million!! I also hope GM6 will fall in the category of the 5 million from the IBC being dedicated to Research in the UK, and to all those that want to give it a go.

Nick Grillo and all his supporters are pushing and fighting hard. The money is there now, as well as the hope of a promising drug. Those terminally ill do not have the luxury of time on their side, lets hope bureaucracy will not be standing in the way, and wasting time.

xox

It reguarly happens with expensive cancer drugs CC. its one of problems with a public health service that there will always be finite resources.

Your man at Genevron is only speculating about your insurance companies. I suspect it will be on a company by company basis and likely depend on the extent of customers cover.

willsandco
13th February 2015, 15:59
I didn't go to chiropodist about my walking - I only went to have my toenails cut! I have sent a email to Sheffield to ask their advice today about it all. If it is a good idea, they might be able to suggest a quicker and possibly cheaper option x

ccinjersey
13th February 2015, 16:38
Yes that sounds accurate Steve in regards to our insurance companies and what they actually authorize for payment, vs. our out of pocket expense.

For example when I worked per diem at the hospital I did not have health insurance thru my employer and had to pick up my own policy privately. I took a basic plan because it was the least expensive, and yet still cost me $400 a month for just myself covered. This plan did not cover chemotherapy so in the event I would have needed it, it would not have been paid thru my health insurance.

I fear even with GM6 being fast tracked by the FDA the dollars and cents of it all thru our health insurance plans are going to be another major issue in getting it into the hand of those with ALS. Even more of a struggle because this illness is considered rare, if this illness was a public healthcare epidemic this conversation would not even be taken place because the cure, drug, vaccination whatever you want to call it would be in everyone’s reach. I truly believe that.

Although I certainly hope Nick is correct, and it will be covered by our health insurance policies.

xox

Steve
13th February 2015, 17:13
me too. It all comes down to £/$ whatever the system, which feels wrong when talking about people's lives.

mik
13th February 2015, 19:02
hi again,
when it comes to genervon non of the charities are going to support it, even though it could be a huge treatment breakthrough. Even with FDA approval which i dont see happening without ALSA support,without some support from the MNDA and other european charities i dont see it getting euro approval. Believe me i really hope i'm wrong and wish the MNDA would take a look at it. People are right about professionals who need more MND training but its also care agencies, why not produce a kind of workshop, which is probley the wrong term, where professionals, carers, newly diagnosed and their family members can all learn about what to expect from MND. These could be done in each region and involve us MND veterans?
just a thought.
mik

willsandco
13th February 2015, 19:25
Mik, that is such a good idea about workshops, I, for one, would be up for that and so would Peter, to represent the carers. It should include all professionals, private, public and charity sectors. It might then eradicate the distressing conversation I had with a private practitioner yesterday who knew so little about MND. I explained the average life expectancy of MND, as per official literature. (average 14 months from diagnosis) She said " people with MND live longer than that, as do people with Parkinsons" What has Parkinsons to with MND, other than it being neurological? No professional practioner should proffer opinions like this without real awareness. I was upset because I couldn't talk, I had to write down to explain to her that I was unlikely to live long - and that really distressed me. It was all quite unnecessary! Awareness is all and every bit of available monies should be allocated to that very thing. love Joycie

mik
15th February 2015, 00:00
hi,
i think some kind of workshop where all people, professionals and basically all who deal with MND could get together and learn from each others experiences could work wonders. Getting everyone in one room save time and money. Its a nice idea but i could never see any medical professionals taking time out to attend.
mik

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