PATIENT PETITION URGING PRESIDENT BUSH TO CONTINUE STEM CELL RESEARCH FUNDING PRESENTED TO HHS SENIOR POLICY ADVISOR
Members of an Internet forum for persons with chronic neurological illnesses have gathered over 13,000 signatures in an online, grassroots petition they authored, urging President Bush to allow continued public funding for stem cell research. The petition was signed, with comments, by both the chronically ill and their loved ones, as well as eminent scientists and health care advocates. Running 750 pages, the petition was personally presented in hard copy to HHS Senior Policy Advisor Mary Kay Mantho during a meeting on May 7th, and another copy was presented to the office of Arlen Specter on May 8th to assist him in passing his stem cell funding bill, SB723. A meeting with HHS Secretary Thompson is currently being arranged
(PRWEB) May 13, 2001
FOR IMMEDIATE RELEASE
MAY 7, 2001
PATIENT PETITION URGING PRESIDENT BUSH TO CONTINUE STEM CELL RESEARCH FUNDING PRESENTED TO HHS SENIOR POLICY ADVISOR
Grassroots Effort by Chronically Ill Gains 13,000 Signatures in Dramatic Appeal
A paper copy of an online petition (http://www. petitiononline. com/stmcll/petition. html (http://www. petitiononline. com/stmcll/petition. html)) to President Bush, organized by members of the largest Internet forum for the chronically ill, was presented today to Mary Kay Mantho, Senior Policy Advisor to Health and Human Services Secretary Tommy Thompson, to be given to Secretary Thompson and President George Bush, urging the president to allow public funding of broad pluripotent embryonic and fetal stem cell research. Although the petition can be viewed, signed, and the total number of signatures seen online, a paper copy of the petition, totaling more than seven-hundred pages of signatures and comments, was given to Ms. Mantho to underscore the broad public support for such research.
The petition was presented by Ilyce Randall, President of the Canavan Resrearch Foundation. Canavan's Disease is a fatal illness that strikes young children, and is currently incurable. Ms. Randall's three-year-old son Max suffers from the disease, and was present at the meeting with Ms. Mantho. "Canavan's Disease is an 'orphan disease,' which strikes only about 400 children a year" said Ms. Randall. "Without the development of broad-based therapies that may be applied to scores of chronic degenerative illnesses, such as those that are likely to result from stem cell research, diseases like Canavan's will probably never attract enough research dollars to come up with a cure. With stem cell research, my son has a chance to live out a normal life."
For additional information on this initiative--or to find out more on stem cell research and funding--see below, or contact:
Gregory M. Wasson, Petition author
Phone: 707 -- 795 -- 7107
Fax: 707 -- 795 -- 7107
E-mail: gmwpark@aol. com
Stem Cell Facts
Pluripotent stem cell research is thought by most scientists to hold the key to curing over 150 neurological and other illnesses and injuries, as well as cancers, cardiovascular conditions, and stroke. Members of the Massachusetts General Hospital Neurological Web Forum (www. braintalk. org), which serves as a support and information exchange mechanism for thousands of persons with ALS, Alzheimer's, Parkinson's disease and over 100 other maladies, as well as their caregivers, came up with the idea of a petition after President Bush, who could have eliminated public funding by executive order because of his views on the use of fetal and embryonic tissue, instead referred the matter to HHS Secretary Tommy Thompson for further review.
Pluripotent stem cells are the "master cells" of the body, capable of transforming into almost any cell, including muscle, bone, and even brain cells, once commonly thought to be irreplaceable. According to Gerald Fischbach, former head of the National Institute of Neurological Disorders and Stroke, a Department of the National Institutes of Health, most scientists believe pluripotent stem cells from embryonic and fetal sources hold the greatest therapeutic potential of all stem cells.
Proponents of the use of stem cell therapies, including 80 Nobel laureates who recently faxed the president about the issue, believe that the development of such therapies will eventually lead to cures for more than 128 million persons afflicted with various illnesses.
Major diseases killed 1,495,100 Americans in 1998 and cost our government $218.5 billion. That tally does not include the death toll from, nor direct government expenditures on, another 150 maladies with smaller patient populations, including dozens of neuro-degenerative conditions that kill tens of thousands and cost additional billions each year.
Petition Facts and Comments from the Author and Other Participants
Petition author Greg Wasson said he was surprised but pleased by the success of the petition. Mr. Wasson, who suffers from Parkinson's disease, stated that several forum members decided that the delay by Bush presented an opportunity to give a voice to those with the biggest stake in stem cell research -- the chronically ill themselves. Among those working on the petition and a letter writing campaign were individuals suffering from or caring for persons with ALS, Alzheimer's, Canavan's, and Parkinson's. Having never put together such a campaign before, and having contact with each other only by their computers and telephones, the petition organizers learned the ropes of grassroots advocacy as they went.
They put the petition online for accessibility, put it on as many search engines as possible, then began networking - contacting friends, family, and every disease support group or organization they could locate. They sent each contact a standard request for signatures, which provided hypertext links to the petition and to a primer on stem cell research. They also asked each person contacted to send the request to everyone on their own e-mail lists.
The response was phenomenal. In addition to thousands of signatures by the chronically ill and their loved ones, the petition garnered signatures from Ole Isacson, the Harvard scientist who announced this year that he had "cured" Parkinson's disease in laboratory animals, world reknowned geneticist Charles Janofsky, as well as scores of neurologists and other physicians. The petition has so far been endorsed by Project ALS, the Wisconsin Association for Biomedical Research and Education, Hope for ALS, and several other groups. Dan Perry, Executive Director of the Alliance for Aging Research and chair of the CURe coalition of 123 organizations that earlier urged President Bush to delay a decision on stem cells, 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."
The MGH petition organizers plan to keep the petition online and gather more signatures. "I wish we could have gathered signatures for a few more weeks, even days, before sending the petition to the Bush Administration. But with a decision by President Bush looming, this is one party we didn't want to be late for," said John Davis, another petition organizer and an ALS sufferer.
