Thoughts on the BBC programme for GDNF?


#41

Well said Vicki.
One of the most beneficial parts of being on the GDNF trial was being part of a glass-half-full team of people. Feeling we were doing something to maybe cure Parkinson’s. It was never going to be a cure in a few days. Clinical research never is. The same people complaining that it takes too long would be complaining if it took less time then was not safe.
Yes, the programmes were hard hitting and upsetting. Even I felt that and I was there. But it has brought PD into the public’s thoughts, now they have a better idea of what we live with and how trials work.
Yes, the trial was deemed a failure as it did not statistically prove its end point. But so many of the other things recorded in the trial were a resounding success. For goodness sake, the damaged brain cells regrew!
Yes, it was devastating that Phizer pulled out but other people/companies have money they could put towards it to get Phase 3 off the table and into the research lab. Everyone involved in the trial wants it to continue, can see the value of the research, except Phizer. Well, they aren’t the only pharmaceutical company.
So please try to be positive and be proactive. Darren Calder has a justgiving site and so does Funding Neuro to raise money to get Phase 3 on track. At present this is our best chance of finding a cure for Parkinson’s.
Moaning makes you feel better short term (this had made me feel better!!) but try doing something positive instead - or at least as well. Donate £1. Spread the word.
Positive.
JMVx


#42

I am Jayne, wife of Darren who featured in the documentary. I have read this thread with disbelief and disappointment. I would urge those that have come away feeling negative to watch the documentary again as I believe your initial view and comments come from your heart and not from your head.
Hopefully I can help you with some of your comments. I make no apology for the length of my comments but urge you to stick with it.

  1. The gap of a week in Ep 1 & 2 reflected the reality of the situation. The trial finished in Dec 2016 and it took months to pick through all the data before finding out that the primary trial findings had not met their objective. For the participants it was an endless wait and the film maker did an outstanding job of reflecting this by putting the gap in.
  2. The comments about false hope!!! There is a world of difference between the words “Hope” and “expectation” The Trial has delivered incredible “Hope” for the future of those with Parkinson’s.
    Successful use of the delivery system into the Brain has meant that drugs can now be delivered direct to affected brain cells for the first time in history!! Newly diagnosed PD patients should be jumping for joy at this incredible break through… just think what the next 10 years will deliver once the leanings have been built upon!!!
  3. Without brave participants we would never move medical science forward and we shall need more when we bring GDNF back to the table for further investigation. The strength of GDNF was diluted by 17 times to bring it back from its previous trial. One of the reasons we failed to meet the primary end point is that the drug was given too week for the timescale measured. Now we know this we can use these learnings to move GDNF forward again. This does NOT mean the trial failed!!! You cannot get Drugs to licence without Testing, plenty of drugs out there have failed phases and then succeeded at the end. Are we to just give up and rollover to Parkinson’s??? I don’t think so!!!
  4. My last point goes to you who criticise the fundraising and I think these comments have frustrated me most. Yes of course the charities are jumping on the back of the documentary. Their banks have been depleted by supporting This invaluable Trial and they need all the help they can get to replenish their funds and go again! This is about helping you!!!
    Rather than criticising this incredible documentary maybe you should get your positive pants on and try yourselves to make a difference to the lives of those living with Parkinson’s.
    I am all for freedom of speech but I am embarrassed for you for the ignorance you have displayed in your negative commentary!!

#43

@vicki, @JMV, @JaynewithaY. I for one am really glad you have contributed to this thread. I put off watching part 2 until yesterday because of all the negativity and was surprised by how encouraging the outcome was as I’d assumed that it must have been completely without benefit from some of the comments made here. One of the things I said to my husband afterwards was how amazing it was to have tested out this delivery system and how beneficial that will be to future research.

Having said that, I don’t think that anyone here was criticizing the participants who were absolutely amazing and so brave! Thank you so much to all of you for doing this.


#44

Thanks for your comments, I only want to make sure the facts are understood. If someone incorrectly interprets something about the trial or documentary I want to help if possible because for us they are are one and the same, it is just that the filmmaker has had to squeeze what has been 7 years of filming into 2 hours of screen time


#45

Agree with all the comments. The programme gave us Hope, But like dreams the Hope of a cure was taken away. Will have to just struggle on with being diagnosed with PD. Know there is no cure coming our way.


#46

No, Jbmad! There is hope. Don’t give up. The trial was amazingly successful in other ways and so much was learned from it. We will have to struggle on but make the struggle worthwhile by getting people to donate to Darren Calder’s just giving page and get phase 3 back on track. It is the most promising research for us all at the moment. Positive.
JMV


#47


This is the man who risked his life so you could have a better one!
10 hours of brain surgery the first time, then another 6 hours of brain surgery to replace a Catheter when his brain swelled and dislodged one.
Still he fights on on your behalf!!!
If there is to be no hope of a cure we would all be standing round with our hands in our pockets and with sloping shoulders where is your resilience for pity’s sake


#48

Hi HavanaS .I watched the documentary and was very pee’d off about the outcome. However, the 2 guys in charge are still convinced that it works. Seeing the improvement in most of the participants despite not reaching the 20% made the decision worse. The Canadian guy who was willing to dip into his own pocket is trying again to get money for a poss 3rd stage. Therefore I ask the question…can’t Parkinsons UK make a donation from the 84 million they have to get it started, or do they need it to pay admin fees and salaries for their staff??? Rick


#49

Thank you everyone for taking the time to respond to my original post. It has been great to receive so many different views. I was taking the two TV programmes in isolation as being a mum with two toddlers, I had no opportunity to read the research results that were apparently available online, so yes- you could say that I was ignorant on that basis.

I think that most people on this forum either have Parkinsons themselves or a loved one with Parkinsons so I think we all understand the significance of the trials and how important they are/ how much work was involved and how brave the participants were in selflessly putting themselves forward for the greater good. I apologise if my post was seen as being negative to any of those points. That wasn’t my intention at all. I was simply giving my view on how watching the TV programme made me feel, from my own personal experience of having a mum who has had Parkinsons for 16 years. Parkinsons is so different in every person and sadly everyone is at a different stage (either the beginning of early diagnosis) or the latter stages where you can sometimes have a multitude of heartbreaking medical challenges to deal with. Naturally, dependent on where you are on that scale, the programme will elicit different emotions, even if you can understand that this is a huge scientific step forward towards a cure.

I applaud everyone involved in the trial. I have learnt a lot from the posts on here so thank you to those who were directly involved in sharing their insights.


#50

HavanahS - bless your heart! trust me when I say my knowledge of Parkinson’s was -10 on a scale of 1 - 10 when Darren embarked on this trial. 6 years later and I am still learning, every day picking up new points along the way. To have toddlers with a mum who has PArkinsons is indeed an incredible challenge for you so I understand you have limited time for research too. Today I was balancing child care for my 2 year old grandson with a Parky hubby whose entire email history had vanished into thin air while I was stamping on my keyboard in frustration. Don’t ever be worried about airing your views, life is for learning and I hope our debate has benefited all who have been reading.


#51

I read this thread with a sense of deja vu. Vicki’s wonderful film on agonists a few years back got the same sort of treatment. Are we PwP so sensitive reality is too hard to bare. It was an excellent documentary series. Thankyou BBC.


#52

Yes. Even if the study was flawed due to the way the placebo was done, it still created data.

What is needed are a bunch of real heroes who effectively sign away their life. People who go all the way even if it means they are in the half who go total placebo all the way. True double blind. Not peeps who want a cure now and go placebo for awhile then a piece of the action please. And a strong med team able to handle losses.Thats the way forward and thats why we have no cure. We are soft in the west, defensively legalistic lefty soft, directionless, leaderless, big corp controlled on track for rapid climate change and woefully ignorant. Yes I have PD, we all have something eventually, and no one gets out alive. ;).


#53

So for Phase 3 of the trial, what are the next steps in terms of making that happen? How much funding is required? Is it the 3 million that is mentioned in this thread or much, much more?

I understand from what I have read that perhaps a larger study, a higher dose of GDNF, or a longer ‘double-blind’ period would provide a better chance of seeing a clear difference between the groups — and that these are all factors that need to be carefully considered in planning future studies.

Is there anyone on here directly involved and can talk with more knowledge about what is already happening to progress that?


#54

Adagio
I thought the BBC got it right. So maybe they gave us hope ( me included) that we were a lot closer to a cure than we are but they showed ,as far as possible, a true glimpse of what life is like for PD sufferers and their families. All the hopes and dreams shattered . It gave an idea of what it’s like to have PD, that it’s not just about ‘having the shakes’ They showed the lengths PWPD are willing to go to,to help find a cure ,if not for themselves but for others with this nasty disease giving an idea of just how it feels to have hope only to have it taken away again. I would like to say a big thank you to all who took part for their, honesty, bravery and good humour. Thanks also to Tom for his never ending wit and charm, I would like to have known him.


#55

HavanaS - I am not an expert but we are being kept informed.
If you get 5 mins to spare google Funding Neuro. you will see what a difference the delivery system is already making to the lives of children with brain tumours. Scroll down and press the “donate to our work with GDNF “ to see that £204,658.00 has been pledged to date and read the story. Transparency is crucial. You can do a similar thing on the Cure Parkinson’s Trust website to get some incite quickly.
We are all fundraising hard while the likes of PUK, CPT, Meedgenesis, Southmead team etc try and work on the difference we need to make to ensure the next clinical trial meets its primary target. This is incredibly complex but I can assure you there is serious work going on in the background to correct the learnings and move forward benefitting from all the knowledge. Meanwhile I would like to thank the BBC for taking this incredible docmentary on its travels abroad so the profile of Parkinsons can be raised through the roof.
Wherever it goes, the fundraisers will follow and together we will work on getting this wonderful drug to its next stage. This will take time and I do not believe my hubby will personally benefit again until the drug is licensed but we have to be open and honest and think to the next generation too.
If it had not been for the negative commentary I would not have thought to share so I thank everyone for giving me the opportunity to speak out.


#56

I am very surprised at the negativity of the comments, particularly at the beginning of this thread. Admittedly, I had read an account of the research in the New Scientist, as well as this site, before I watched the documentary, and also knew something of the results through one of the volunteers. I also had prior knowledge that Pfizer had withdrawn from investment in Parkinson’s and Alzheimer’s research. I can see how someone without that prior knowledge might have been disappointed by the outcome.

Nevertheless, I found the documentary fascinating, and it does give me hope that ultimately it will lead to a cure. I don’t think it can be overemphasised how significant and exciting this is. All of the drugs available now do no more than treat the symptoms of Parkinson’s. There is nothing which will even slow down the progress of the disease. Coincidentally, I have just started attending the Bristol Brain Centre, and I will be indicating my willingness to take part in any further trials.


#57

i agree the programme was informative about progress,great bravery of the volunteers, it is all abasis of future research probably. As a quite new sufferer it put a few things, symptoms etc, in perspective even if a bit nerve racking.


#58

New to this Forum. PWP. Inspired by the GNDF participants. Tried to donate via JustGiving and/or FundingNeuro but it seems you need to join Facebook which I do not want to do. Alternative I used was Cure Parkinsons Trust which has a ring fenced fund for future GNDF trials. This can be gift aided too.


#59

Hi @Cheng52,

I’d just thought I’d chime in quickly to let you know that you can also make a donation via our website here - https://www.parkinsons.org.uk/research/clinical-trial-gdnf?_ga=2.59508197.998732140.1552905482-1451300323.1513081131.

I hope this is useful to you.

Best wishes,
Reah


#60

Hoping you managed to donate now.
There is a direct link to funding Neuro and Darren below