CBS news features the Robbs
 

Last night the Robbs were interviewed about the stem cell ban lift. Note the age of diagnosis. They were representing CAMR I think - I know them from PAN.

http://www.cbsnews.com/video/watch/?id=4851718n


paula

oh now i really see.....
 

Just when I am going to go out for a walk, sun streaming through the blinds - there's a breeze too - I see the video and had to post. Then I listened to it again....new guidelines? NIIH? What do you think is the reason for this...and has someone got plans to light a fire under the NIH -and if there is a year of guideline writing ahead, patients in large enough numbers, must be in there.

How innovative can we be? It's usually measured in terms of organizations doing their thing all day long and pwps in submissive mode with the same top people in hypermode doing wonderful things and getting many awards. That is what we needed when we were kids..And these people earned their awards and make things happen - a real postive in the PD world....lol

But now we need something different. Sorry...another year is asking way too much and obama is completely out of touch. We have to do something - powerful. And the trained patient experts need to do it. The religious debate is over, but the way people differ in their thinking could hold up funding. i wasn't clear there- i'm calling for objectivity and fast results.

i'm not really thinking this out...it's flowing and it's true to me anyway. I am not criticizing - I'm analyzing and summarizing my world as i know it, assuming that someone will come in and correct me because now there is someone paying attention.

I wll eagerly await the actual document and see that CBS is still using David Prentice, who had his hair combed different, but still has GDNF on his list of Adult Stem Cell treatments..He doesn't represent me - I don't know how he gets away with it. He was also used on TV during Michael and the giant Rush week of wiggling and words, ending with Michael changing the majority in govt. Michael exposed himself like no other that week. magical to the pwp community; because no one had ever done something like that before.

you can't trust anyone to be objective on the hill....sorry. should patients decide?I think we are going to see that the religious debate was only part of the hold up. The majority rules, and who can we trust to represent everyone? Obama is either out of touch here or is just going to not carry thru like other presidents? We have to get in there this time.....who has the chain for the fence? lol

I mean it tho. Why didn't i see this coming? Patients are monkeys. Gettin hot - going to Rick's grumpy corner. It will not happen without patient representation, because we will be upset about that and not feel the least inclined to recruit or participate in trials that have not changed one bit. Trials are what should have new guidelines...well i was fooled again.

There is a group who just wants to know which is better....it will get lost in the NIH amid name calling between the left/right.....endlessly. If that can't stop the people who do it need to be replaced.

bad news during sinemet overload hours....equals honest emotion..we need a third eye up there ...someone who knows how to use their pineal gland.
geez!



p

Time for homework!
 

Right on, Paula! I see what you are saying and it must be new guidelines that are (to borrow a phrase from Fox News) FAIR AND BALANCED. For that to happen, it needs to be people who understand the terminology, the politics, and somebody not biased by ideology or religious preference.

It's very hard to get an objective opinion on issues like this, but this is the time for grassroots to take action. But first, there's homework to do. Here's some archived existing, pre-existing NIH guidelines:

http://stemcells.nih.gov/policy/guidelines.asp

Get busy!
Peggy

The PDF Learning Institute graduates, patient advisory councils, pipeliners,and contributing with background training forum members who are willing and able...not me ...not enough stamina right now but would want to consult ...unless online....should be validated here.

Well maybe Obama will read our forum and change it to make it go faster...that's about the only odds we have of seeing anything for quite some time, and the NIH does not have an appointed director yet either.

Peg - very useful thanks...I"m not up to this fight. But I despise dishonesty, which seems to have replaced the "whole truth and nothing but the truth" in the world and still manages to take me by surprise.

paula

I am confused......
 

Paula and Peggy,
I am missing something here.......
This is how i see and understand the CBS news clip
President Obama makes it legal to use federal money for ES cell work which means NIH can fund grants that use or make ES cells.

New guidelines will be set by a scientific advisory group as to how to procure samples etc,. Is this a wrong assumption??
Guidelines are already in place at various institutes, univ and funding agencies. Scientists like Weisman, Goldstein who are familiar political and ethical arguments would be prepared to come up with new and improved guidelines. Am I wrong again?

It could take upto an year before funding starts.
NIH grant cycles do take time, minimum of 6 months from the day a grant is submitted to the day money is released (jan grant goes to NIH; april grant is reviewed, scores are given, top 10% or so get funded, funding starts from July 1st) typical cycle is 9 months, and so I am not surprised at the time frame mentioned in the news/

I have no clue about the couple and the other guy who were interviewed..............Know the Stanford scientiist who said a few words about stem cells and PD

I know I am missing something!! Educate me!!
Thanks
Girija

Hi girija,

You are probably right; there is no reason to be surprised. I was because in my way of thinking I just didn't figure another year into the time equation. I have given it thought and decided just to stay out of the stem cell discussions. There are others around to fight that battle and I don't have enough interest to let it get me that worked up. It's the future; and beaucracy is what it is. So I'm sorry for spouting off - I think.

:)
paula

oh i didn't answer your question. David Prentice is representing the pro-life -Family Research Council or something like that. He has a list of adult stem cell treatments that is just not accurate. It included GDNF as an adult stem cell treatment because it was to grow new ones. Do you know of anyone who is being treated with GDNF now? That's a stretch. The Robbs are a married couple who are patient advocates. Karl was diagnosed with PD at age 17.

what part of this surprises you??
 

people speaking for us. taking a year to get stem cell research rolling..........

its all the "same tune, different day".

Until we learn to play "outside the box" we'll be fighting a gazillion other groups for the crumbs of the pie left by the "players", big pharma etc.

Charlie

The signing of the executive order by Pres. Obama will take place at 11:45 this morning and will be televised on CNN and MSNBC and probably other stations.

Wanted to add: i read a number of news accounts this morning -as usual mixed - some very good , but others confusing. The Washington Post article stated
"As supporters had hoped, Obama's order will come without any caveats and leave the details to be worked out by the National Institutes of Health, which will have 120 days to develop guidelines that will be used to vet requests for federal funding for research. The guidelines will address a host of thorny ethical issues raised by such research, such as how to obtain proper consent from donors of embryos used to obtain the cells.

"As a result of lifting those limitations, the president is in effect allowing federal funding of embryonic stem research to the extent it's permitted by federal law -- that is work with stem cells themselves, not the derivation of those stem cells," Varmus said.

Obama does not intend to call for the repeal of the Dickey-Wicker amendment, which bars the use of federal funds to conduct research on embryos directly.

"Congress will have to make a determination about how they want to deal with that," Barnes said. "
full text at
http://www.washingtonpost.com/wp-dyn...l?hpid=topnews

So the NIH has 120 days to come up with new guidelines. . Maybe it will take less than a year for funding to begin, if tthey can build on what already exists. Another news account said that at least immediately researchers willl be freed from needing to use different facilities for federally funded and non-federally funding research.

There will probably be accompanying legislation.

I agree we need to ge the message to the NIH that input by actual patients -- and not just disease advoacy orgs--- should also be a part of the process and keep the urgency of getting funding moving as soon as possible on the front burner.

It's all about Dickey-Wicker
 

(Just as you mentioned in our conversation yesterday, Paula!)

The Dickey-Wicker amendment passed by Congress in the 90's doesn't allow federal taxes to pay for embryo creation or to do research on them that would destroy them. That's why the stem cell research being talked about recently always says it will use "leftover embryos from invitro fertilization" because those embryos were not created for the purpose of research, and that the actual stem cell lines from those embryos must be derived without the use of federal funds.

Once the stem cell lines are derived, then federal funds can be used on the research going forward.

Because it is legislation, Obama cannot overturn the amendment; the NIH must author some sort of guidelines like the ones mentioned above. But the topic to overturn the amendment in Congress will probably also happen at some point as well. In the meantime, federally funded stem cell research can go forward with stem cell lines that are privately created.

Here's the NY Times on the topic today:

"The officials, who provided details of the announcement that Mr. Obama will make around midday Monday at the White House, said the president would leave it to Congress to determine whether the long-standing legislative ban on federal financing for human embryo experiments should also be overturned.

Yet, people on both sides of the stem cell debate say Mr. Obama’s announcement could lead to a reconsideration of the ban on Capitol Hill, an idea so controversial and fraught with ethical implications that the mere discussion of it would have been unthinkable just a few months ago, when President George W. Bush was in office.

The ban, known as the Dickey-Wicker amendment, first became law in 1996, and has been renewed by Congress every year since. It specifically bans the use of tax dollars to create human embryos — a practice that is routine in private fertility clinics — or for research in which embryos are destroyed, discarded or knowingly subjected to risk of injury."

http://www.nytimes.com/2009/03/09/us...m.html?_r=1&hp

The president is speaking now!