I was reading about parkinson's disease on wiki. I was completely shocked. Patients in general complain about big pharmacies and about how they only want to make money and don't want to cure the sick people. Though this could be true to some extent, do you know who are the ones that are to blame the most for the slow progression to find a cure for PD ? ... PD patients, their friends and their family !!!

Why do I say this ? OK, so on wiki I read the following:

The Michael J. Fox Foundation aims to develop a cure for Parkinson's disease. In recent years it has been the major Parkinson's fundraiser in the US, providing 140 million dollars in funding between 2001 and 2008. (source: wiki)

140 million dollars in 9 years ? Are we even serious ? Is this a joke ????? I mean, there are more than 1 million people in the US that have PD. Let's assume 1 million people for calculations. If each patient would donate 50 dollar a month to parkinson research ... 50 dollar is not much. I think almost everyone can afford this. That would make 50 million dollar a month and 600 million dollar a year. 600 million dollar a year is 3 times more than the MJFox foundation has invested in PD research over a period of 9 years. If friends and family would do the same, this amount could get crazy big ... up to maybe 30.000 million dollar a year.

We could get a cure for PD and other neurogenerative diseases very fast if we would sponsor this research properly.

That's a great suggestion so I just signed up for my monthly donation with MJFF.
Thanks!

I will do the same in the weekend.

I am also seriously considering of starting up a foundation in my own country. My main goal would be to reach people with PD and their families and make them aware of the importance of funding. A local foundation can more easily reach local people than a global one like MJFF.

The only problem I currently face is to find out how to start something like that. I have 0 experience.

OK, guys. As said I am donating to the foundation. I also bought 2 shirts. It's not much, but it is a start. I am now learning to make a website. I will add a forum to it and parkinson's disease related news articles. And then I will start to set up a foundation for PD research money. The concept of the foundation will be to make all PD patients invest 50 dollar a month in PD research. I know I have big plans and I don't know whether they are realistic. But the higher you aim, the further you come.

Next month my company will send me out for 2 months to Germany. I will wear the MJFF shirt and I will actively speak to people on the streets and malls and try to convince them to donate money to the MJFF or some local German foundation. I don't care it isn't my foundation, nor do I care that I don't work for them. These foundations work for the people we love and are sick, and for me that is enough to work for them for free .

I really have the dream to make PD patients donate 50 euro/dollar a month. In the US and Europe combined there are 2.5 million PD patients. If every PD patient in US and Europe would just donate this small amount of money, PD research would get a boost of 1500 million dollar a year. Again ... this might be naif and aiming too high. But it is not something impossible.

...INTO GETTING OFF MY BUTT AND FOLLOWING YOUR LEAD! Perhaps you have inspired/shamed others to do the same.
Robert

No need to feel embarassed. Being passive is very normal. I have always been passive myself. Due to circumstances and things I learned and got involved in, I realized that you can make the difference for yourself if you are active. Just as I inspired you, my actions are the result of other people that inspired me.

If I inspired you, I am very happy about it. Try to do the same. Try to find ways to inspire other people to fund Parkinson's research, especially those that have parkinson's themselves, as well as their relatives and friends. If we can reach and inspire those people, the cure will be there faster than we could ever imagine.

OK, great. Today I met a friend of mine for a drink and at some moment we had a short talk about PD. I told him about my ideas and plans and that I also donate money to the MJFF. Suddenly he asked me to send me the link to the MJF Foundation. He will donate some money too because he thinks people should be more willing to give some of their money to a good cause. Awesome !!! I converted one of my friends into a donor for MJFF

I know there are some folks in this forum who have been making donations to fund research over the years. Thank you. But, I have to say, I'm grateful for Diego24's observation (not to mention his generous donation to MJFF--and for the recurring gifts made by others.)

We will soon crossover the $300M in terms of research funded since inception in 2000. We are particularly proud of what we have been able to do with this funding. It's pretty hard to describe the breadth of our activities in sentence or two (since we typically have over 300 active grants in our portfolio at any point in time) but in a nutshell...we are deploying capital in higher-risk, novel therapeutic targets as well as tackling some of the scientific challenges that stand in the way of greater progress faster (eg, biomarkers, data sharing, clinical trial recruitment, tool creation/distribution). We do this with urgency and efficiency at the heart of our actions.

I recently presented some information to our patient council about MJFF fundraising that they found shocking. The median gift to the foundation is $50. I don't want to make light of the fact that for many, $50 is a real financial burden, but, that number was much smaller than the council members guessed. I wonder if somehow the generosity of a few of our high profile donors leads folks to believe we don't need more money for research and/or their donations (of any size) won't matter. It simply isn't true. I am happy to direct you to more information about the science we see in front of us but are unable to fund at this time---more donations definitely lead to more relevant research faster. Here you can read more about what donor support has enabled and about essential science we hope to fund as our support grows. https://www.michaeljfox.org/files/fo.../Brin_Book.pdf

Another surprising factoid....Of those in our database who we know to have PD or a PD connection, about 6% made a donation to MJFF in 2011. Admittedly, there may be many, many folks donating to us with connections that haven't shared -- so, perhaps the solidarity is greater. But, the fact that 94% of those we do know with connections aren't making gifts to support research, means there is great upside as we get the word out. The Brin Wojcicki Challenge, currently running through the end of 2012, matches all donations from new supporters. The Challenge is meant to be capacity building for just the reasons we are mentioning in this thread.

Again, I am grateful for all the support we get from everyone --- over 54,000 donors in 2011. And, yet I see firsthand what it takes to move the dial. I think we are on to something in terms of progress made and our ability to channel meaningful dollars to the most promising opportunities-- I hope you see it too. (One good way to track science progress if by signing up for our foxfeedblog at https://www.michaeljfox.org/foundation/news.html).

I don't mean this to come off as a solicitation but rather to underscore Diego24's observation of what the community is capable of achieving. Thanks for everything you all do.

Debi

when people hear about Brin's millions, $50 seems like a decent contribution. it's obvious you have the most money, and i know you have it put to use very quickly. i am also motivated to donate.

Is this 50 $ a year or a month ??? If it is a year, this is a real shocker. We will never find the cure fast if this is all society is willing to give. There must be something wrong with people. I see all people buying new expensive cell phones every 3 months but when it comes to funding they don't want to know anything about it. And then when they or a relative gets the disease they start blaming the big companies.

Does your foundation have any plans to increase this percentage ? I think most PD patients are not aware of the impact they can have on PD research via funding. I think all neurologists all over the world should make their patients aware of this. Also, maybe several broadcasts on the news could make PD patients aware of this. Another way to achieve it, is to approach people on street and ask if they know someone with PD and explain how important it is PD patients (and their relatives and friends) fund this research.

Yesterday I read an article in a national paper about the recent discovery that links a certain beta amyloid gene to Alzheimer protection. Someone replied to this article that the news was useless because big companies will not make a cure but only think of ways to get most benefit from this. I really get a bit angry when people blame big companies. People always point to others. But they never look at their own responsibility in the whole story. So I asked this guy "How many did you spent in funding cancer, Alzheimer or any other disease ?". He didn't give any reply.

I posted yesterday about the Flurizan clinical trial III for Alzheimer. It costed the company 200 million $ !!! And the results was negative. People tend to forget how big of a risk it is for a company to do such a trial. And when it comes to disease modification of neurodegenerative diseases the odds of your medicine being the cure is very little. Of course companies will not invest agressively in PD or AD. You have also to look at it from their perspective. The risk is very high. A company can go bankrupt if they invest all their resources into something that won't work. We can lower this risk for them by proper funding. That's why funding is so important.