reminding you all that i am not as updated as i need to be, i would like to know if anyone can tell us the status of the SCNT procedure when the ban is lifted. A stem cell researcher who spoke with us on a PAN call awhile back, seemed to be saying that without SCNT, research will be limited.

is Somatic Cell Nuclear Transfer included in the lifting of this ban? Any new language included in what's coming that we need to know? Not everyone attends or participates in PAN, so posting it here will reach new readers. Comments from those directly involved are needed, but I know that normal people take the weekend off.

mahalo,
paula

Katie's Huffington Post blog didn't delve deeply into the specific needs and opportunities for stem cells in PD. Her intent was to prompt executive action. But I figured I could elaborate a bit here...MJFF representatives were invited to participate in a few of the Obama team transition meetings for HHS. I attended the one specifically on stem cells and can share that the advocacy voices in the room were clear and consistent -- the hopes and expectations for policy changes around stem cells were about promoting a pro-science agenda and specifically enacting policy that would put hES cells on equal footing for dollars with all other arenas in science...there wasn't any attempt to overtly direct specific funding to hES cell research over other areas but rather to merely (and finally) let the science speak for itself and compete with all other meritorious work for government support. So, not about establishing a priority to fund stem cells but just a favorable environment.

Experts in the field generally agree that therapeutic relevance for PD is still unknown (and likely further away than initially hoped) but many acknowledge that hES cells could, at a minimum, provide interesting tools (model systems in a dish) that could have near-term impact for other therapies. So, the field is far from dead.

When I think of the concrete progress made in PD-specific stem cell research in the last 8 years, I'm pretty proud --- MJFF (with Kinetics Foundation) was probably the lead driver in those proof-of-concept efforts. And, predictably, while progress has been made, we now better understand the next stage challenges in translating this idea into a therapeutic reality. Even in MJFF's portfolio we've gone from the large and broad allocations in the earlier years to more targeted grants today (the overall result is that stem cells is a smaller part of the portfolio now than in 2005 for instance). Hard to know where it will go from here...we've seen and funded several highly innovative strategies to address better transplant outcomes through our Rapid Response program--a good sign I hope...a breakthrough would be fantastic but admitedly it feels elusive at this point.

All this to say that we, at least, believe whole-heartedly in the notion that stem cell research should proceed in all fields including PD without undue constraints. And, we at MJFF remain open to potential areas for funding (applied work toward new therapies as well as research tools) but those ideas compete with a myriad of other ideas with potential therapeutic relevance.

Debi

I have a question?
Why can't Michael help Dr. Michel Levesque, he is using adult stems, and they are approved to work, they were successful even though they did not continue to keep Mr. Turner, completely PD free -yet I spoke with Dennis,
and he was thrilled they gave him his life back for the almost 3.5 years,
it is much better we have a great man -Dr. Levesque who is still able to try
to help us - be on the right track now then in 10 more years...
tic -tic - tic...
that is the noise that continues to pass us by -
I support adult neural stem cells for many reasons,
why wont the Fox Foundation give a very large donation to Dr. Levesque?

Debi,

Is SCNT still in the research mix as well as general ESCR? The former has always seemed the most hopeful approach to me, although more controversial.

Thanks!

http://www.sciencedaily.com/releases...0223083144.htm
Human Stem Cells Provide A New Model For Lou Gehrig's Disease
"...Overcoming the limited success of previous models, a report published in Disease Models & Mechanisms (DMM) describes how neurons can be derived from human stem cells, and engineered to mimic inherited ALS...

...This human cell-derived model of ALS provides a new method of studying this disease and testing novel therapeutics. ...Additionally, this research may aid other gene-linked neurodegenerative diseases, as they too may benefit from studies in a human cell-derived model."

That's current information and thanks very much...ESCR will be added to the mix, then. I didn't hear anything today, so I'm assuming the ban wasn't lifted yet, as a blogger predicted in Huffington Post? I can see all the dancing that must be going on, with money and competition.

Tena, i don't mean to speak for debi, but that question isn't a very simple one....lol i know you have great respect for Levesque but i'm balancing on a high wire to avoid politics, please help here...lol

more later and thanks for understanding the question,

paula

Just in case she even reads my Q, -
this a really an excellent way to get stem cells going in the USA,
so it should be considered by FOX, the only problem I can see is that
MJF wont be one of the 15 patients in the trial, however
wouldnt it be awesome to see how many people will start the event he has gone all over the USA including the state of - MO. Missouri
for people to vote for stem cells -why is the adult stem cells below [his]expectations?
MJF is not a doctor nor is he a neuroscientist, neurologist, and if he was not an actor yet lived as a regular Pd patient, he would be thrilled to see
adult stem cells, - I was raised Catholic, and I still see a problem in the ethics department on fetal stem cells...
so paula - dont worry your head about my one lil question -okay!
I have the right to ask...
and I am sure it wont hurt - to ask... just in case

While Michael Fox and others at MJFF have been advocates for research freedom issues, and hence have been eager to see hES cells eligible for federal funding, our own research dollars have been distributed agnostically. We have funded work with PD-specific goals that utilizes a variety of stem cell sources from adult stem cells to bone marrow cells to neural cells to human embryonic cells (you can go to michaeljfox.org and search our grant data base to view the specifics). The research shows that only hES cells have successfully been differentiated into robust numbers of dopamine neurons that exhibit specific, relevant characteristics.

By the way, I hope it is clear that no project undertaken at MJFF is done so with treatments for Michael in mind. That is his desire/mandate, the Board's desire/mandate and the staff's desire/mandate. Our effort isn't about him or his particular variety of disease. We are a public charity and, as such, all our work it carried out with public good in mind.

In terms of Michael helping Dr. Levesque...again, Michael doesn't see his role as helping anybody in particular. His/our organization is here to evaluate all the potential paths forward in delivering improved treatments and, ultimately a cure for PD to patients. We work toward that end in an aggressive and systematic way. And, I appreciate that not everyone will agree with all of our decisions.

We have been aware of Levesque's claims for several years. We have had conversations with him about this. We have long standing concerns about his lack of preliminary data and/or validity of data. And we remain perplexed that these procedures would go into humans at this time. Are these procedures free and being performed in a clinical trial setting or offered as "treatments?" Questions remain even after publication--for instance it isn't clear to us (in the recent paper in the newly created journal where it appears) is how/when the cell extraction took place--during a DBS operation?--what results are from what action?

My bigger point here is that we follow all the activities and traditional/non-traditional trends (believe me if we don't see them, they find us!) and work diligently to formulate a point of view. We need to do so in order to make our funding decisions.

Debi

Debi: Just adding to the "thanks" for your participation. I am one of the many tic tic ticer's mentioned by Tena and appreciate following the stem cell issues via MJFF. Bob C

dear debibrooks,

I have been an advocate/ patient for research freedom issues for more than just PD patients, we have so many people with PD - this neurodegenerative disease seems to be more of a modern day plaugue.
a simple NO... would have sufficed
the MJFF can do as it pleases with its money.

yet to say the good Doctor Michel Levesque is just claiming
He claims nothing he hasn't proven -abit insulting for such a promising
way to help those, with many different types neurodegenerative illnesses,
and those with spinal cord injury...etc


sincerely,
a patient with Parkinson's Disease -
who has HOPE in Adult Stem Cell's very promising future, because it is nearer to the door of curing patients.
I being raised Catholic, I have respect for every life.
thank you,
tena