The education concerns subcommittee has laid out for you the following information so that you can contact your legislator or just have basic background data on Parkinson’s Disease. This includes information on “What is Parkinson’s Disease”, “Answers on Stem Cell Research” and “How to Contact Your Legislator”.

WHAT IS PARKINSON’S DISEASE ?

Parkinson’s Disease is a chronic neurological condition. It is a slowly progressive disease that affects a small area of cells in the mid-brain known as the substantia nigra. Gradual degeneration of these cells causes a reduction in a vital chemical known as dopamine and results in Parkinson’s.
 
The symptoms of Parkinson’s are as follows: 1) resting tremors on one side of the body; 2) generalized slowness of movement (bradykinesia); 3) stiffness of limbs (rigidity); and 4) gait or balance problems (postural dysfunction). Other possible symptoms may include small cramped handwriting, lack of arm swing on the affected side, decreased facial expression, lowered voice volume, feelings of depression or anxiety, episodes of feeling “stuck in place” when initiating a step (called “freezing”), slight foot drag on the affected side, increase in dandruff or oily skin, and less frequent blinking and swallowing. Due to slowness of movement and rigidity, patients may also experience difficulty in rising from a chair, and ascending or descending stairs.

Because not all patients experience all of these symptoms, each patient’s progression is different. Each patient’s symptoms don’t always appear in the same order, and some may not have tremors, or rigidity, but all patients suffer from slowness of movement. Parkinson’s Disease is classified as a movement disorder, and at it’s heart, is a mobility illness.

 
The usual course of the illness is approximately 10 to 15 years. The medical community is seeing many more cases of Young-Onset Parkinson’s than used to be. It was thought to be an “old-people’s” disease, but that is not the case any longer. 

Patients who are diagnosed in younger years have a different outlook on the illness and their daily lives than older people do. People who are diagnosed in their 30’s and 40’s, for instance, will have to learn how to continue working and dealing with their symptoms at the same time. They will also have to learn how to deal with symptoms in their daily lives at home, as well.

Answers to Common Stem Cell Questions 

What are stem cells? 

Stem cells are master cells that have the ability to transform themselves into other cell types, including those in the brain, heart, bones, muscles and skin. 

What are embryonic stem cells? 

Embryonic stem cells are cells contained in embryos that have the ability to transform themselves into virtually any other type of cell in the body. They are called pluripotent. It is this quality that enables the tiny embryo to develop into a fully formed body. About five days after fertilization, the human embryo becomes a blastocyst -- a hollow sphere of about 100 cells. Cells in its outer layer go on to form the placenta and other organs needed to support fetal development in the uterus. The inner cells go on to form nearly all of the tissues of the body. These are the embryonic stem cells used in research. 

What are adult stem cells? 

The name is a misnomer because they are harbored in mature tissue -- in the bodies of children as well as adults. Adult stem cells are more specialized than embryonic ones and give rise to specific cell types. They are called multipotent. The mature body uses these cells as ''spare parts'' to replace other worn out cells. For example, certain stem cells in the bone marrow spawn red blood cells, white blood cells and blood platelets. Recent research has suggested adult stem cells can turn into many more cell types than once believed possible. 

What is the source of embryonic stem cells? 

Scientists generally harvest embryonic stem cells from embryos left over in fertility clinics after in vitro fertilization techniques. These ''test-tube baby'' techniques, used to help infertile couples have a baby, involve fertilizing a woman's egg cells with a man's sperm cells in a laboratory dish. Several embryos are created at a time, and not all are implanted into the mother's womb to create live births. Embryos left over by the couple are slated for destruction by the fertility clinic. These can serve as the source for deriving stem cells, a process that involves removing the blastocyst's inner cells and destroying the embryo. 

What are the possible medical uses for stem cells? 

Scientists hope to harness the transformational qualities of stem cells to provide treatments for a variety of diseases affecting millions of people worldwide. Because stem cells can turn into many other cell types with the right prompting, doctors may be able to replace tissues and organs damaged by disease or injury to restore healthy function. For example, in people with Parkinson's disease, injecting stem cells into the area of the brain that controls muscle movement, where the disease kills nerve cells, might regenerate the neurons and reverse the illnesses. This procedure would be called a stem cell transplantation. Therapeutic applications of stem cells potentially also could treat illnesses including: diabetes; Alzheimer's disease; stroke; heart attack; multiple sclerosis; blood, bone and bone marrow ailments; severe burns by providing skin grafts; spinal cord injuries, and cancer patients who have lost cells and tissue to radiation and chemotherapy. 

What other medical uses are possible? 

Using stem cells, researchers would be able to test a drug's therapeutic effects and toxic side effects in human tissue without using a laboratory animal as a proxy. Sometimes the reaction of laboratory animals to a given drug does not match the human reaction to the drug. In addition, stem cells could be harnessed and packaged to deliver gene therapies to specific targets in the body to treat genetic problems. 

Are embryonic stem cells better than adult stem cells? 

It is too early to say. Embryonic stem cells boast two important qualities: they can become almost anything in the body and they can be grown in culture in an unlimited quantity. The disadvantages are that a patient's immune system might reject transplants of embryonic stem cells just as some organ transplants are rejected, and that runaway growth of embryonic stem cells could produce tumors. Because adult stem cells would be taken from the very patient who would receive them later in treatment, there are no rejection issues. Disadvantages in adult stem cells include: doubts about whether they can transform themselves as readily as embryonic stem cells; difficulty in growing them in culture at the quantity needed to facilitate transplants, and worry that years of exposure to toxins, radiation and DNA replicating errors could leave them with genetic abnormalities. 

What's the controversy? 

For some people, the destruction of any embryo is tantamount to murdering a human being. Leaders of the Roman Catholic Church and some other religious and political figures hold this view. 

Has the federal government ever funded research involving human embryonic stem cells? 

No, it has not. Human embryonic stem cells were first isolated in 1998, but a 1995 law banned federal funding for any research ''in which a human embryo (is) destroyed, discarded or knowingly subjected to risk of injury greater than that allowed on fetuses in utero,'' or in the mother's womb. 

In January 1999, the Department of Health and Human Services (HHS) general counsel's office issued a legal opinion that the earlier law did not apply to stem cells derived using private money from spare embryos at fertility clinics because the stem cells themselves were not embryos and the destruction of the embryos was not financed by the government. The National Institutes of Health, the government agency that funds medical research and had requested the opinion in 1998, released guidelines Nov. 21, 2000, for federal funding of embryonic stem cell research. Two key conditions included were that federally funded researchers cannot derive the stem cells, a process that involves destroying an embryo, and the source of the embryos that gave rise to the stem cells must be embryos created for in vitro fertility treatment. 

Shortly after being sworn into office in January, President Bush ordered HHS to reconsider its legal opinion. In April, HHS Secretary Tommy Thompson directed the NIH to cancel its first scheduled meeting to consider research proAposals submitted by scientists seeking federal funds for work involving human embryonic stem cells. 


On August 9th President Bush made a speech to the American people in which he made the following statement:

“As a result of private research, more than 60 genetically diverse stem cell lines already exist." I have concluded that we should allow federal funds to be used for research on these existing stem cell lines "where the life and death decision has already been made." This allows us to explore the 
promise and potential of stem cell research "without crossing a fundamental moral line by providing taxpayer funding that would sanction or encourage further destruction of human embryos that have at least the potential for life."

What is the controversy?

Federal funding of research using existing embryonic stem cell lines is consistent with the President's belief in the fundamental value and sanctity of human life. The President's decision reflects his fundamental commitment to preserving the value and sanctity of human life and his desire to promote vital medical research. The President's decision will permit federal funding 
of research using the more than 60 existing stem cell lines that have already been derived, but will not sanction or encourage the destruction of additional human embryos. The embryos from which the existing stem cell lines were created have already been destroyed and no longer have the possibility of further development as human beings. Federal funding of medical research 
on these existing stem cell lines will promote the sanctity of life "without undermining it" and will allow scientists to explore the potential of this research to benefit the lives of millions of people who suffer from life destroying diseases. 

Federal funds will only be used for research on existing stem cell lines that were derived: (1) with the informed consent of the donors; (2) from excess embryos created solely for reproductive purposes; and (3) without any financial inducements to the donors. In order to ensure that federal funds are used to support only stem cell research that is scientifically sound, legal, and ethical, the NIH will examine the derivation of all existing stem cell lines and create a registry of those lines that satisfy this criteria. More than 60 existing stem cell lines from genetically diverse populations around the world are expected to be available for federally-funded research. 

No federal funds will be used for: (1) the derivation or use of stem cell lines derived from newly destroyed embryos; (2) the creation of any human embryos for research purposes; or (3) the cloning of human embryos for any purpose. This decision relates only to the use of federal funds for research on existing stem cell lines derived in accordance with the criteria set forth above. 

The President will create a new President's Council on Bioethics, chaired by Dr. Leon Kass, an expert in biomedical ethics and a professor at the University of Chicago, to study the human and moral ramifications of developments in biomedical and behaviorial science and technology. The 
Council will study such issues as embryo and stem cell research, assisted reproduction, cloning, genetic screening, gene therapy, euthanasia, 

Immediate reaction to Bush's announcement was somewhat muted. Sen. Orrin Hatch, R-Utah, who has spoken in favor of embryonic stem cell research, called Bush's decision "thoughtful, decent and honorable”. But others questioned whether research using only the existing stem cell lines would be sufficient. 

Research supporter Montel Williams, a talk-show host who suffers from multiple sclerosis, said it was not known whether the 60 cell lines referred to by Bush were "viable." He urged funding for research using stem cells from excess embryos that are to be discarded anyway. 

Sen. Edward Kennedy, D-Massachusetts, another research supporter, welcomed Bush's decision as "an important step forward," according to The Associated Press. But, Kennedy added, Bush's decision "doesn't go far enough to fulfill the lifesaving potential of this promising new medical research."

Bush, sources said, previously had decided to flatly oppose federal funding of research that involved or used embryos gathered solely for research purposes, or embryos created through cloning human cells. 

The issue Bush grappled with was whether to stand by his previous statements opposing federal funding for any embryonic stem cell research, or to reverse course and support the position backed by many of his closest advisers, including Thompson, Vice President Dick Cheney, Chief of Staff Andy Card and White House counselor Karen Hughes, according to sources. 

The issue we all face then is how do we educate the nation and how do we stay in touch with our legislators as we strive to promote more funding to end this disease.

CONTACTING A PUBLIC OFFICIAL

There are many ways to contact a public official, such as your Legislator or the President. They include personal visits, phone calls, letters or e-mail.

PERSONAL VISITS: These can be done in two ways: a visit to their home office or in Washington, DC. Person-to-person visits are the most effective way to develop a relationship with your elected representative. 

TIPS: 

- Plan ahead. Know what you want to talk about. Have your talking points on paper, if necessary.

- Bring a fact sheet with you to leave with the person you talk with. (You may not be meeting   with the official but with a staff member).

- Be on time and ready to go when the official is ready.

- Be sure to leave a card or your name, address and phone number.


PHONE CALLS: If an issue is moving fast calling may be the only way to make an impact.

TIPS:

- If Congress is in session and you do not have your legislator’s direct line, all members of Congress can be reached through the Capitol Hill operator at 202-224-3121. When Congress is not in session look in your local phone book for the Members local phone number. 

- Be prepared with what you want to say. State what you are calling about (issue, bill number, etc.) and state exactly what you want the member to do.

- Be sure to leave you name, address and phone number.

- If you want to call the White House on a policy issue, the White House switchboard number is 202-456-1414



WRITING AND E-MAILING: These are very effective methods for you to ensure that policy makers hear your voice. Contacts using these methods are better if they are in multiple letters or e-mails but even one well-written letter or e-mail can make a difference. 

TIPS:

- Write a personal letter. Tell your own story about how the issue affects you, your family and your community.

- Identify yourself as a constituent.

- In the first paragraph identify the issue or bill number you are writing about.

- Try to keep your letter to one page (no more than two).

- Send a copy of your letter to me to keep us informed of your efforts.

- If you don’t know whom your member of congress is: check www.house.gov or www.senate.gov, call 202-224-3121 or check your phone book, local newspapers or library.


Letters to Members of Congress should be addressed as follows:

For Senators: The Honorable (name) For Representatives: The Honorable (name) 

U.S. Senate U.S. House of Representatives 

Washington, DC 20510 Washington, DC 20515

For the President: 

President George W. Bush
The White House
1600 Pennsylvania Ave.
Washington, DC 20500