Watch 60 Minutes on Sunday September 11!

[MaryBear]

Then act! Focus will be on AMGEN, the company that holds hostage the patent for a new promising Parkinson's med and closed clinical trials, because the med is expected not to reap them huge profits.

[medeak]

1. yes.. I got an alert today

On Sunday, September 11, the CBS newsmagazine 60 Minutes will air a program on the controversy surrounding the recently halted clinical trials of GDNF, a growth factor that is widely believed to have potential for the treatment of Parkinson's.

This is a media event of great importance to the Parkinson's community, as well as the Parkinson's Disease Foundation (PDF), as we have unwaveringly supported the patients who participated in the clinical trial and who wish to have continued access to GDNF. PDF supports the view that GDNF is potentially useful for the treatment of PD and urges further investigation to gather more scientific data about the long-term effects of GDNF. I strongly encourage you to watch it; check your local listing for air times.

Although none of us have yet seen the program, we do expect it to feature representatives of the key players in the drama, including the patients who participated in the trial and the doctors who treated them. It will also surely direct a public spotlight on the complex process of drug development, including the rights and roles of manufacturers, regulators and of course the trial participants (and their families) on whom the entire process of clinical trials depends.

For more information on PDF's official statement regarding GDNF and the background of this potential therapy, please visit please click here to visit our website.

[DemInDistress]

2. Thanks for the heads up....nt

[Carolab]

3. Wow, that is just despicable. I had a friend with PD. Awful.

The meds he took just didn't work that well. He eventually died (of melanoma) and the meds actually exacerbated his cancer!

[medeak]

4. am told stem cells may do the same....

hubby has PD and hooked up to the best..if there are cancer cells in body stem cells will exacerbate them.

[MaryBear]

5. A human face for this issue - received via email

Hi all,

I want to tell you something about Barbara Blake-Krebs. I don’t think most of you knew her from the parkinsn list - except maybe Perry. Barb and I met on the list while working for the Udall Bill in our respective states. We were very different – Barb, a Republican, public radio station producer from Kansas, 10 years older than me. Except for the Internet, our paths would never have crossed. But we both shared the vision of helping to increase awareness about young onset PD through our writing. We started collaborating on the book towards the end of 1999. Her husband Fred told me working on the book and seeing it published became the joy of Barb’s life.

Barb had been diagnosed with PD at the same age as I was – at 45, but 10 years before me. Although i know everyone's disease is different, I felt i could be seeing my future in Barb’s present life. After we first stated working together in 1999, Barb's symptoms started to worsen substantially. She rarely left the house. Over the next 3 years it became more and more difficult for her to type, to walk and finally to care for herself. She eventually became wheelchair bound. Towards the end of this period she began to require full-time assistance at home. Fred tried to arrange for home health care while he was at work, but it became difficult to find reliable aides and prohibitively expensive. Fred was still teaching, so they didn't qualify for Medicaid, which would have helped pay for the aides. Eventually, Barb entered a nursing home – there was no other choice.

Towards the end she became like Mo Udall and Milly Kondracke – unable to speak, to move, or to swallow – she was kept alive by a feeding tube. in a way her death must have been a relief to her and her family.

When I think about Barb,I can't help but think about where I am likely be in 10 years with no better treatments options available – except maybe for GDNF, if we are successful.

So the news of Barb’s death makes it even more imperative to me that we push forward with our campaign to reinstate GDNF research for now and for the future, in the most effective way possible. I agree that patient’s voices must be heard and decision-making should be shared, but I think it is also important that we recognize that we all have common goals and that we are able to agree on a workable plan, even if it means making some compromises along the way.

Thanks for listening,
A friend