Saturday, May 2, 2009

Parkinson's Disease Community Input for Stem Cell Federal Support Guidelines Needed

It's time to be counted: Your PD-related Input is Needed for the Federal Funding Guidelines for Embryonic Stem Cell Research (ESCR)

We received the email below from the Parkinson's Action Network (PAN) as did many of you. We are reprinting that email as a reminder that there is still work to be done to be done by all of us. It's as simple as a CLICK on the comment submission form link and a CUT and PASTE of selected paragraphs below... although you may want to edit some of the wording which you can do easily after the paste.

Communication from PAN:

Help Ensure Strong Federal Support for Stem Cell Research Submit Comments on NIH Draft Stem Cell Guidelines

Deadline May 26th!
On March 9th, President Obama issued an Executive Order lifting the past administration’s restrictive policy on embryonic stem cell research (ESCR) and instructing the National Institutes of Health(NIH) to develop guidelines for federal funding of ESCR. NIH has released its draft guidelines and the public has been given the opportunity to submit comments. NIH will review the content and volume of comments as it drafts its final framework for federal funding of ESCR.

It is critical that we show our support for this important research. Please help generate as many comments as possible between now and the May 26th filing deadline. Each comment will be recorded and counted!

The Executive Order was a major step forward, but as with many complex issues, there are details of the draft guidelines that should be changed and/or clarified to ensure the framework created builds on current progress. The Parkinson’s community has been a leader in the fight for an ethical framework for ESCR—please continue your advocacy efforts by helping us ensure the final guidelines allow for this important science to advance as quickly as possible. To read a summary of the draft guidelines, click here.

Submit your comments using the instructions below and encourage your family, friends, and community to submit comments.

How to Submit Your Comments:
To access the NIH comment form, visit:
Provide your name, and select ‘self’ for Affiliation;
Copy and paste the text below into the comment box,
Edit as appropriate,
Provide the security check ID on the form,
and click ‘Submit Comments.’

Suggested Comment Text: Embryonic stem cell research holds great promise for millions of Americans suffering from many diseases and disorders. I am not a scientist, but I am a member of the Parkinson’s community and have been following progress in this field with great interest. Significant strides have been made over the past decade, and the final guidelines issued by NIH must build on this progress so that cures and new therapies can get to patients as quickly as possible. The final guidelines should not create new bureaucratic hurdles that will slow the pace of progress.

I am pleased that these draft guidelines -- in Section II B -- would appear to permit federal funding of stem cell lines previously not eligible for federal funding and for new lines created in the future from surplus embryos at fertility clinics. However, as drafted, Section II B does not ensure that any current stem cell line will meet the criteria outlined and thus be eligible for federal funding. It will be important for the final guidelines to allow federal funds for research using all stem cell lines created by following ethical practices at the time they were derived. This will ensure that the final guidelines build on progress that has already been made.

I also believe that the final guidelines should permit federal funding for stem cell lines derived from sources other than excess IVF embryos, such as somatic cell nuclear transfer (SCNT). Sections II Band IV of the draft guidelines do not permit such federal funding and I recommend that the final guidelines provide federal funding using stem cell lines derived in other ways. If not, it is essential that the NIH continue to monitor developments in this exciting research area and to update these guidelines as the research progresses.

To learn more about human embryonic stem cell research, please visit the Coalition for the Advancement of Medical Research at

1 comment:

  1. I sent my comments to NIH. Thanks for making it so easy.



Welcome to Parkinsons Focus Today.
We are delighted to hear from you by comment here
or through email as found in Contact Us.

Please do not include email addresses if leaving a comment online.
Email addresses are used only for email responses.

Spammers take note: your messages will not be published. The comments section is for an exchange of ideas, not for backlinks.