Parkinson's Disease Community: Stem Cell Guideline Input Deadline Only 12 Days Away

Now is the time to make your voice heard by using your keyboard

This is easy. On May 2rd we posted the links to both the NIH comment submission form and the Parkinson's Action Network suggested wording template letter to the National Institutes of Health. If you haven't submitted a comment, you have only 12 days remaining to do so.

We thought you might be interested in that the ISSCR, International Society for Stem Cell Research had to say to their scientists in their Draft NIH Human Stem Cell Guidelines Comments Information letter distributed recently.

Consider that all constructive input helps. There is concern that members of the scientific community who are inundated by paper may not take advantage of this window of opportunity. So it is time to forward the PAN and the ISSCR letters to the people we know in scientific fields. Perhaps your doctors would like a voice. The request might come better from you than an organization.

Don't forget, this isn't just about Parkinson's disease, it is about cancers, diabetes, kidney disease, ALS or Lou Gehrig's disease, multiple sclerosis, catastrophic spinal cord injury, heart disease, retinal disease, arthritis, burn victims and many others. It is about the potential to save not only the living but the quality of life. In the long run, it may also be about being able to cut health care costs and prevent the death and suffering of countless lab animals.

In order to be counted you need to click on the article link and in it you will find the next links. The time is here, let's move forward.

Interesting reading

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:
http://nihoerextra.nih.gov/stem_cells/add.htm
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
http://www.camradvocacy.org/

Stem Cell Guideline Draft Issued 4/17/09

Will this be enough for Parkinson's Disease?

By now most of us have heard, seen or read the news that President Obama lifted some but not all of the federal funding restrictions on embryonic stem cell research in Executive Order 13505 entitled Removing Barriers to Responsible Scientific Research Involving Human Stem Cells on 3/09/09. And while there are some glitches which scientists aren't thrilled about, the draft version of the guidelines were issued today.

First off the only research allowed would be those in vitro fertilization (IVF) discards from fertility clinics provided there is informed consent on file. The oddity here is that some of the older stem cell lines which President Bush had approved might very well not be eligible for lack of that consent.

In addition, human embryonic stem cells derived from sources other than human reproductive purposes "including somatic cell nuclear transfer, parthenogenesis, and/of IVF embryos created for research purposes" will not be allowed under the Guidelines.

The sad thing is that be restricting the stem cells to the discards, federal funding may not be available for the new stem cell lines which may be needed for diseases such as Parkinson's disease. Which means that use of stem cells derived from those non-IVF embryos could not be used, cloned or "genetically customized for a potential recipient" per an AP release. This does not mean that private companies cannot conduct research with their own financing, it simply restricts use of federal monies.

Nonetheless, there are ten billion stimulus dollars waiting for proposals to be submitted. According to the NY Times, the NIH has twenty approved proposals on the runway waiting for the July 2009 guideline finalization...which of course is subject to change. Once the official-until-changed guidlines are published we'll put up the Federal Register link.

Meanwhile here is a link to the draft version issued 4/17/09:
http://stemcells.nih.gov/policy/2009draft.htm

Only time will tell if the limitations will limit the future of PD stem cell research.