hi all

it's amazing what a little root of a little blade of grass can do!

janet


extracted from thread 005009.html at MGH PD WebForum:

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Ilyce Randell (Canavan Mom)
posted May 09, 2001 12:35 AM
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Dear Friends, and Family:

As most of you know I have been very actively involved in circulating a
petition urging President Bush to allow federal funding of stem cell
research.

First I would like to say a big "THANK YOU" to everyone who tirelessly
helped with this grassroots effort! The petition was a huge success with
over 13,000 signatures...this could not have happened without everyone
working together, and fighting for a common cause.

I am also extremely proud to announce that I was able to personally deliver
this 750 page document to the Senior Policy Advisor to the US Secretary of
Health and Human Services, The Honorable Tommy Thompson.

While in Washington, DC, I also delivered a copy to Senator Arlen Specter's
office to aid in his efforts to pass this crucial legislation.

I would like to formally thank the authors of the petition for giving me
the tremendous honor of presenting this important document.

"Thank you" to the members of the MGH web forums for ALS, Alzheimer's, and
Parkinson's for welcoming the Canavan forum into your community, and
entrusting me with such a wonderful task! Thank you everyone who worked so
hard to make this amazing effort a success, and thank you for the honor of
allowing me to represent you! The petition really did make a very powerful
statement.

With respect and warm regards,

Ilyce Randell

My three-year-old son, Max, suffers from Canavan disease (CD).
CD is a fatal and progressive brain disease.
I am fighting for a cure to save all the little victims of Canavan.
[log in to unmask]
www.canavanresearch.org

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Greg Wasson (GregM)
posted May 09, 2001 01:06 AM
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Ilyce,

Thanks so much for presenting the Petition to Ms. Mantho and Senator
Spector. Hopefully we will continue to use the petition and other advocacy
efforts to help speed the day when most neurological illnesses and many
other diseases are only a memory.

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Cover letter read to Ms. Mantho during presentation of the petition

May 7, 2001
Mary Kay Mantho
Senior Policy Advisor
Office of the Secretary
United States Department of Health and Human Services

Dear Ms. Mantho,

We, the undersigned, are proud to present you with a copy of this
grassroots petition urging President Bush to continue to allow public
funding for broad research involving pluripotent stem cells.

The 12,911 names attached to the petition include some of the most
prominent scientists in this country, including Dr. Ole Isacson of Harvard
University, geneticist Dr. Charles Janofsky, and scores of other
neurologists and M.D.’s.

The endorsement of patient advocacy groups, and organizations such as the
Wisconsin Association for Biomedical Research and Education, may be found
as well.

But the heart of this petition rests in the thousands of everyday people
who took the time to read and sign this document, often adding their
comments.

These men, women, and children either suffer from, or care about people who
are victims of, a host of illnesses or conditions that may be alleviated or
cured through therapies resulting from publicly funded stem cell research.

Among these 12,911 people are those suffering from ALS, Alzheimer’s
Disease, Canavan’s Disease, MS, Parkinson’s Disease, diabetes, and many
other deadly illnesses.

The attached briefing paper indicates the costs of these illnesses, in
terms of dollars and deaths, as well as the staggering potential for
health-care savings, and saved lives, that may come from pluripotent stem
cell research.

Almost everyday there are new reports of the potential of pluripotent stem
cells.

Just recently, the NIH announced that it had produced both insulin and
dopamine from stem cells - findings that may lead to cures for both
diabetes and Parkinson’s.

There are other reports of clinical research findings suggesting that
pluripotent stem cells may one day soon be able to reverse heart disease,
some cancers, liver disease, and other non-neurological ailments.

The Administration’s response to the issue of pluripotent stem cells could
be remembered as its greatest legacy.

Those who signed this petition come from big and small towns all across
this country.

They were contacted by friends and relatives in a grassroots campaign.

Not one dime was spent to accumulate these signatures.

Not one lobbyist, consultant, or professional advocacy organization was
involved.

This is significant because it means that the thoughts and comments of
those who signed the petition represent the thinking of a broad
cross-section of citizens.

The comments you will find next to many of the names are straightforward
and unadorned.

Many are simple cries for help.

In their simplicity they touch the hearts of those who read their words.

We thank you for accepting this petition today on behalf the Department of
Health and Human Services.

We hope that the names and words of those who appear here will receive the
attention they deserve.

Thank you for your time and consideration,

[Signatures of organizers]

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Greg Wasson (GregM)
posted May 12, 2001 12:24 PM
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Hi Folks,

Just wanted everyone to know that after thinking about the distribution of
our petition news, particularly our meeting at HHS, we have issued a second
press release, this time through a professional distribution service.

After reading substantially more about press releases, including customary
format and delivery procedures, we felt that the likelihood of good press
coverage would be greatly increased by reformatting the release, and having
it distributed by a solid delivery service widely used by businesses and
familiar names.

Therefore, on Monday by 9am the following press release, professionally
formatted by the service, will be sitting on the desks of individually
targeted editors at over 2,400 newpapers, weekly magazines, wire
services,etc. We hope to see some results within a couple of days.

So watch your local papers for some variation on the following release:

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FOR IMMEDIATE RELEASE

PATIENT PETITION URGING STEM CELL FUNDING PRESENTED TO HHS POLICY CZAR

For Further information:
[contact info. provided]

Campaign by Chronically Ill Gathers 13,000 Signatures in Dramatic Appeal

A petition containing 13,000 signatures, authored by members of the
Massachusetts General Hospital Neurological Web Forum, urging President
Bush to continue public funding for embryonic stem cell research, was
presented last week to Health and Human Services Senior Policy Advisor Mary
Kay Mantho to be given to HHS Secretary Tommy Thompson.

Federal guidelines currently allow such funding, but have been criticized
by President Bush. Thompson is reviewing the guidelines at the president’s
request. The controversy over stem cells, "master cells" that can transform
into any cell type, has grown in recent weeks. 80 Nobel Prize winners have
urged the president to fund stem cell research, asserting it may soon cure
Alzheimers, Diabetes, ALS, and Parkinson's, as well many other diseases,
including heart disease. Many right-to life organizations oppose such
research, however, claiming it destroys the lives of unborn children.

The petition, including 750 pages of signatures and comments by persons
with chronic illnesses and other citizens, was presented by Ilyce Randell,
a Canavan's Disease advocate. Canavan's is an incurable fatal childhood
illness. Her son Max, who was at the meeting, suffers from the disease.
"Canavan's is a disease which strikes only 400 children a year," said Ms.
Randell. "Without therapies that can be applied to many different
illnesses, which are likely to result from stem cell research, Canavan's
will never attract enough dollars to produce a cure. Stem cell research
offers the only hope for Max to live a normal life."

Greg Wasson, petition author and Parkinson's sufferer, said members of the
Internet forum decided to write a petition after President Bush, who was
expected to nullify the present guidelines, referred the matter to Thompson
for review. The delay presented an opportunity to give a voice to those
with the biggest stake in stem cell research - the chronically ill. They
put the petition online (www.petitiononline.com/stmcll/petition.html), and
began a grassroots campaign to collect signatures, contacting family,
friends, and disease organizations. Those contacted were asked to forward
the request to others on their own e-mail lists. They also created a
website to provide information about stem cells.

"The response was phenomenal," said Wasson. In addition to signatures by
the chronically ill, the petition garnered signatures from leading
scientists such as Ole Isacson, head of Parkinson's research at Harvard.
Dan Perry, chair of the CURE coalition of 123 organizations that has urged
President Bush to delay a decision on the guidelines, said
"Congratulations...the compelling voice of individuals and families
confronting Parkinson's, ALS, and other devastating health problems is the
most potent weapon we have in this fight."

"I wish we had more time to gather signatures before sending the petition
to Washington. But with a decision on the horizon, this was one party we
didn't want to be late for," said John Davis, a petition organizer and ALS
sufferer.

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Note: Briefing materials, including statistical and other information
collected during the course of this effort, will be available upon inquiry
from individual media outlets.
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janet paterson, an akinetic rigid subtype, albeit perky, parky
PD: 54/41/37 CD: 54/44/43 TEL: 613 256 8340 EMAIL: [log in to unmask]
"a new voice" home page: http://www.geocities.com/janet313/     .
"new voice news" latest posts: http://groups.yahoo.com/group/nvnNET/     .

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