Have you ever been excited to communicate with someone only to realize you probably just wasted your time? I have... (In fairness to them, I don't know what more I could have reasonably expected. I just want this readily available in the USA tomorrow).
My Email to MJFF:
I know of several people who have benefitted TREMENDOUSLY from Pallidothalamic Tractotomy (PTT), a form of Focused Ultrasound, at SoniModul Clinic in Switzerland. PLEASE help lobby the FDA to make this particular form of Focused Ultrasound available in the United States.
Their Reply:
Dear James,
Thank you for contacting The Michael J. Fox Foundation and bringing this to our attention. We will forward your email to our advocacy team.
Kind Regards,
MJFF Research Team
Written by
jimcaster
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That's fair. I probably hoped for too much, but I was hoping for some acknowledgement that it has great potential or that they were already extremely engaged and shared my enthusiasm. I suspect I would have received the same response if I had asked them to lobby for dandelion juice as a treatment. Oh well. We will see what happens.
I hope not, but if a couple of schmuks from the hinterlands like us know more about it than most folks at MJFF, it's really a shame. I am so grateful for this site and learning about things like PTT, which is easily the most encouraging readily available PD treatment of which I am aware.
I thought that the idea of making a lesion in the brain to relieve symptoms of PD is not new, only that the lesion can now be made with focused ultrasound rather than a scalpel.
Since I have been participating in the Michael J. Fox PWP research study group, as one who has been diagnosed with Parkinson’s Disease, for a few years now, I will contact others, and get this ball rolling! It sounds so exciting, and the Michael J. Fox foundation will, I’m sure, find your suggestions on PPT, very intriguing!! Thank you James, for bringing this up in this great forum! I, for one, am very enthusiastic about PPT, and I appreciate your contribution, and participation, in this group!
I don't think we need to worry about that. If we look at the resumes of the people who run the organization, none of them will have trouble getting a job - in a day.
I believe everybody in the organization is of good faith and very hard-working. They would be happy to put themselves out of business.
I know 2 people who have first-hand relationships with senior leadership people and they speak very highly of them.
I have been trying to suppress the exact same thought -- with limited success. On the plus side, I would expect a lot of MJFF employees have deeply personal connections (friends, family or themselves diagnosed with PD) so they should be as motivated as we are. That said, I'm honestly shocked and grateful for learning about it through this forum. It should be front page news...
In my opinion there is no reason to doubt the preparation and honesty of the intentions of the top management of MJFF, said by those who know them personally. I complain of the slowness with which the system moves and there is no valid reason for this from the point of view of PD patients but also of other diseases such as cancer.
Forget the mice at least !!!
This is not the case, but does it seem possible that if there is a discovery it must first be tested on mice?
Then we do not complain if we find ourselves financing with millions of studies on mice and there are so many ways to cure PD in mice.
It's good that some forms of ultrasound are approved in the US for PD. However, Pallidothalamic Tractotomy (PTT) is still not available or approved in the United States. See my reply to Canddy below.
there is a radiologist at Stanford in California who indicates (on the website at least profiles.stanford.edu/pejma... ) that he does this procedure. I am going to look into it after the New Year.
It gets confusing, but if I understand correctly, there are three different types of focused ultrasound, one of which is Pallidothalamic Tractotomy (PTT). PTT is not offered or even the subject of trials in the USA. As your first link indicates, PTT trials are occurring in Japan. To the best of my knowledge, the only place PTT is actually offered and approved is in Switzerland. PTT is of particular interest to me because I do not have tremors or dyskinesia. The forms of Focused Ultrasound available in the USA are geared toward tremors or dyskinesia.
Add to that there are now drug trials using FUS to open the BBB for Parkinson's in Canada - way different than the three lesioning surgeries. Why its super important to name what you are doing with the FUS.
Thanks, Lena. Your explanation of the three different types of focused ultrasound lesioning procedures on the Focused Ultrasound for Parkinson's Disease page on Facebook is the most helpful description of the different procedures which I have seen.
To the best of my knowledge, Pallidothalamic Tractotomy (PTT) is the only form of focused ultrasound for Parkinson's Disease which addresses bradykinesia and rigidity. Trixiedee
My rigidity is about 90% gone and bradykinesia is about 80% with PTT. I believe pallidotomy may address both a little but you definitely would not have it for those symptoms alone.
Dr. Atlas. The psychotic doctor from Stanford who took over the CDC for Trump. Stanford. And now Stanford is also in trouble for that screwball algorithm (check the medical press news, (or statnews.com/2020/12/21/sta... ). Stanford.
If I ever get PTT/FUS I'm saving up to get it done right, in Switzerland. Worth it.
thanks MarionP - I do remember reading about the residents who were "skipped" in the vaccination algorithm. I am still going to contact them after the new year to see what they have to offer. Unfortunately, Switzerland is not in the cards for me at this time. Have a nice holiday.
The MJFF seems totally disinterested in possible nutritional therapies as well. Eg. Thiamine megadoses. Studies would be safe and cheap but MJFF doesn't care.
Hi, LaChristine. I won't keep repeating the same information, but it's true that 2 forms of Focused Ultrasound are available in the USA -- one is primarily to reduce tremors and the other is dyskinesia. However, there is a third type (Pallidothalamic Tractotomy or PTT for short) which is not available in the United States. It's currently being done in Switzerland and being trialed in Japan. It's PTT which I would like to have more widely available.
They probably use that canned response 28 times a day. General letters from the public don't account for much unless they are part of a large swath. They are going to issue a politically tested low risk response governed by guidance from their corporate counsel, both to use as a filter and to keep the hassle factor low, so it probably means nothing that you didn't hear from them one way or another (what you got back wasn't a response, it was a "thanks for calling"). If you were someone who was they considered a player, someone with juice, then they are likely to have expected to hear from you via something more connected than an email addressed to No one In particular.
It wouldn't hurt for all of us to try sending them a letter/email. You never know until you try. We could use your letter as a template or we could come up with our own words or you can add some words for the template if you think of anything else, There are a lot of us & the letters will be coming from all over the US & maybe all over the world. The .more I think about it, the more I like it. We could cc Trump and/or Biden. They probably have no idea about the surgery. It needs to be paid for by insurance.
I know Rock Steady talked with MJFox several years ago and MJ Fox said they
were a research company and wouldn't talk to Rock Steady.
I think it might be more effective if we more or less use our own words so it doesn't get received like a "form letter," but the more emails they receive, the better.
Information concerning FUS PTT, including salient links to the 1st hand reports from those who have had the procedure from both on HU and FB have recently reached some of the upper echelon of MJFF.
What do we imagine they could do to bring it to the US?
Fund double-blind, controlled, placebo trials? Who performs the sham procedure? Far as we know there are only 2 doctors on the planet who do it . Do we really want Dr. J to do half as many real procedures to perform sham procedures?
So, therefore, what role do we expect MJFF to play in bringing it to the US?
I'm probably naive, but I would hope that the lobbying arm of MJFF might be able to lobby the FDA for testing and/or emergency approval without sham procedures because of the successes in Switzerland and presumably in Japan. I also hope MJFF can encourage and enlighten American doctors. It's just plain immoral to subject anyone to sham surgery when we have ample proof that it works. It's equally immoral to have just two doctors in the world performing it, at least in my opinion. Of course, my opinion isn't worth a bucket of warm spit...haha!
Dr. J and Dr. G refuse to do sham procedures but in the US you need a double blinded trial. You need US surgeons on board which they are not currently.
You're right. Supply and demand. Michael J Fox can lobby for approval, but if there's nobody there to supply the need, then what? I think the first question is, how do we get neurosurgeons to take notice and want to learn the procedure?
I think that if the MJFF decided that they could not fund or contribute to funding for testing of B-1 for PD, that makes them more like all of the other organizations whose sole purpose is to search for cures and treatments for a disease. Not a one of them have and likely never will. I have said this before on this forum.
You name the disease and check with the appropriate foundation or non profit and you will see that not one has ever found a cure or an excellent treatment that was almost as good as a cure. I withheld judgment on MJFF until they helped Dr. Colangeli acquire and fill out all of the needed paperwork to get funding for a study on B1 for PwP. All those months of having him get the paperwork perfect for presentation to their approval committee and in the end, it was a NO! So my opinion of these organizations for a single disease has not changed one bit! Another forum member asked me to reserve judgment of MJFF until Dr. Clolangeli got the answer as to whether they would fund or contribute funding to a test of B1. Well that time has come and gone and I will continue to feel the same about "ALL" of these organizations which to me are in the business of keeping their doors open and those huge pay checks coming in! Find a cure and your doors will be closed that very day!
The forum member who asked me to withhold judgment, told me that the person or people that they had met at MJFF were nice and really trying to make the funding happen. They also said that do you think that anyone working here couldn't get hired at another organization with their experience and dedication? I think many of those people could get jobs of similar pay in a similar field, but not all of them would be able to, especially the few at the top of the pay cascade, the ones who make the "big decisions" at MJFF. You may wonder why the top money makers in the MJFF wouldn't have people lining up to get a CEO from MJFF or other high ranking high paid officials from MJFF? The reason is because those very high paying jobs do not come along everyday and many of those positions are "filled in house", meaning that the jobs never even are really available to outsiders.
When you are making the kind of money that the top brass are making at MJFF, it is not easy to find similar jobs that will pay as much. Keep in mind that they are paying 2 job positions at relatively high CEO pay levels. To give you an idea, here are a few of those top salaries at MJFF as of 2017 :
>>>MJFFPR reported employing 159 individuals in 2017 who were compensated $17.7 million, which equates to an average compensation of $111,300. However, only 32 individuals received more than $100,000 in compensation with the 11 most highly compensated individuals listed below:
$823,147: Deborah W Brooks, Co-founder and Executive Vice Chair
$769,411: Todd Sherer, CEO
$401,605: Joanne Martz, Chief Finance and Administrative Officer
$366,036: Sohini Chowdhury, Deputy CEO
$312,224: Brian K Fiske, SVP Research Programs
$291,428: Mark A Frasier, SVP Research Programs
$280,977: Holly Teichholtz, SVP Comm and Content Strategies
$262,618: Emily Moyer, SVP Marketing and Digital Strategy
$244,288: Rachel Dolhun, VP Medical Communications
$240,189: Kristin Pate, VP Development
$222,938: Michael Golombuski, VP Development
7 of the 11 (64%) most highly compensated individuals are female while 4 of the 11 (36%) are male.
It is interesting to note the organization has a CEO who was compensated $769,411, a deputy CEO who was compensated $366,036 and a Chief Finance and Administrative Officer who was compensated $401,605. But, the most highly compensated employee was Deborah W Brooks, Co-founder and Executive Vice Chair of the organization who was compensated $823,147 in 2017. It is unclear why Brooks was compensated more than $800,000 (and more than any other employee) when the organization has a CEO, a deputy CEO and a Chief Finance and Administrative Officer.<<<
So do I think that those top paid MJFF officials could get replacement jobs tomorrow with the same pay? I highly doubt it and I would place them in the same category as similar high ranking employees from other one disease oriented organizations! At other major corporations dealing in similar high dollar amounts each year, if you don't produce significant results in a reasonable amount of time, you get fired! Please let me know if you are aware of one of these one disease organizations that has actually produced very significant progress in their entire existence. MJFF has been around for 20 years. Have they produced significant results that clearly make a huge difference for PwP? How much money have they raised in those 20 years?
As far as I am concerned they do what the other one disease outfits do and work to keep their doors open and those big paychecks rolling in. Call me cynical, but I feel I am just being honest. I'm not saying that there are not good dedicated people working there, but I believe the top brass in most if not all of these one disease organizations are operating to their own agendas and finding a cure is not on their agenda! So if you are expecting these execs to endanger their fat incomes, to help promote something that could in any way put their paycheck at risk, you may want to think that over for a moment.
The page that I linked to for salaries at MJFF for the year 2017 showed a total of 159 employees with total salaries of $17.7 m.
MJFF shows total money taken in for 2017 of 98 m. This suggests that they actually paid out salaries of just over 18% in 2017, not 3%. Here is what MJFF says they are taking in annually:
2014 / 76 m
2015 / 88 m
2016 / 90 m
2017 / 98 m
2018 / 108 m
2019 ?
2020 ?
In the following link on page 61, MJFF says they had almost 108.6 million in research programs in 2018, but on another page shows 108 m for the year. How can you have more research programs than the money you brought in of 108m? what about all other expenses such as salaries?
"How much money have they raised in those 20 years?"
All the donors to this and similar organizations are STUPID! Haven't they figured it out yet, Art? What about MJF? Why doesn't he take action to fire all these CEOs and executive board members for producing no cure? He himself is a PWP, doesn't he want the cure???
Those wages are from 2017 and the 22 million dollar figure is for payroll and office expenses. In 2017 they they say that the 22 million was 21% of what they received that year, but in 2016 they used 35% of what they received for payroll and office expenses. They are considered a nonprofit.
Keeping in mind that wages mentioned were from 2017, in 2019, Deborah W. Brooks compensation was $917,280, up from her 2017 compensation package of $823, 147 for an increase of $94,133. No, I don't think she will be wanting to look for a new job anytime soon or ever!
I look at what notable results they have provided to PwP over the past 20 years and I am at a loss. Maybe I don't know where to look for those results, but if in 20 years you can't show clearly positive results that equate to undisputable quality of life improvements for PwP, then what have you really done other than collect a fat paycheck for the past 20 years? Good intentions are fine, but these people are supposed to be looking for a cure or at a minimum measureable quality of life improvements for PwP. Are there ""any"" benefits for PwP that have improved their quality of life that are directly attributable to MJFF over the past 20 years? Yes, they have definitely funded many studies over the years, but what was the actual benefits for PwP?
As with many organizations, I think it's a mixed bag. They aren't perfect, but I'm not sure any other organizations are doing much more to generate attention and help find a cure.
Jim, I hope they take your request and look into that procedure. As I mentioned before my dr wants me to consider DBS and I’m so afraid if I cross that line and it doesn’t work as expected, I can’t go back. Thank you for bringing it to their attention. Karen
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