Mommy and I went up to Capitol Hill yesterday to talk to a very important congresswoman, Rep. Nancy Pelosi, and people from newspapers and tv stations about the need for the government to support research that can help other families with Fanconi anemia.
We carried a picture of you, which Congresswoman Pelosi held throughout the press conference.
Mom was amazing. She spoke to the reporters and told them that we can't let any more kids like you die. If we spend more money for the right things we can save lives. Mom was very eloquent. You would have been proud of her. I was.
The congresswoman said that it was very nice of us to stay involved after your death. She said that so many families just "check out."
I told her that I like to "keep the wound open," and that what better legacy for you than to help save the lives of other kids. Hey, guess what. Kathy Fiorello told Mom that someone who signed up to be a bone marrow donor at one of your drives just donated marrow for someone's transplant. The way I do math means that there is one more life you have saved.
I also explained to Rep. Pelosi that there is one family that I can think of that seemed to check out. The President's family. I don't know how the President can oppose spending money on research when his sister died of Leukemia. I said to her that "letting your family experience inform your decision making is not a sign of weakness." The President is busy listening to the wrong people and not his heart.
I was at lunch with the President's other sister on Sunday. She is sitting a table behind me.
It wasn't the right time to talk to her about all of this, but I wonder how she feels.
DeGette's stem cell bill stuck
A year after success seemed assured, vote in Senate stalls
By M.E. Sprengelmeyer, Rocky Mountain News
May 24, 2006
WASHINGTON - One year ago today, champagne flowed and glasses were raised in Rep. Diana DeGette's Capitol Hill office to toast a hard-fought win for legislation expanding embryonic stem cell research.
The next morning, DeGette and lead co-sponsor, Rep. Mike Castle, R-Del., tied their legislation in a big, red bow and delivered it to senators who vowed to win swift, final passage.
"Get it done," DeGette told them.
But one year later, nothing has been done. The bill still hasn't moved, as senators struggle to reach an agreement on how to proceed.
Backers' frustration has been building. So on Tuesday, DeGette and her allies marked the anniversary of what has turned into a hollow victory.
"This job needs to get done," DeGette said in an interview. "The research has been put back by five years."
Supporters of embryonic stem cell research say it holds great promise in finding cures for diabetes, multiple sclerosis and other crippling diseases. But they say it has been held back by President Bush's decision to limit federally funded research to the limited number of stem cell lines that were available shortly after he took office in 2001.
The DeGette-Castle bill would greatly expand federal research on leftover embryos from fertility clinics, while also enacting ethical standards meant, in part, to prevent embryos from being created for profit.
That has not satisfied opponents, however, particularly religious conservatives. They equate experimentation on embryos to the destruction of human life and claim promises of medical breakthroughs are nothing but "science fiction."
"I know there's a huge press coming from media sources, from certain ends of the pharmaceutical- experimentation gang, and outrageous claims being made for therapy which remains unproven 20 years after it was begun," said Paul Schenck, director of the National Pro-Life Action Center.
Schenck warned that if Senate Majority Leader Bill Frist, R-Tenn., a physician and likely 2008 presidential candidate, finally does bring DeGette's bill up for a vote, "he'd certainly lose the Catholic, evangelical, conservative religious support he'd hope to have."
Those types of election-year considerations are in the background as supporters of the bill hope for a Senate breakthrough this summer.
On Tuesday, DeGette led a parade of lawmakers who marked their yearlong wait with a series of fiery floor speeches.
DeGette cited Frist's comments last summer publicly backing some type of expanded research and promising to schedule a vote.
"At that point, it appeared the hopes of so many patients and caregivers would finally be realized," DeGette told colleagues.
"Unfortunately, Mr. Speaker, that's the last we heard of this bill."
In the Senate, DeGette said, "they've proceeded to work on numerous other bills, including the designation of 46 post offices, but they have refused to put patients first."
DeGette and House Majority Leader Nancy Pelosi, D-Calif., met with Allen Goldberg and Laurie Strongin, who have used the death of their 7-year-old son, Henry, as a rallying cry for expanded research.
Henry was born in 1995 with a rare genetic disease, Fanconi anemia, which caused his bone marrow to fail to produce blood cells.
The couple had a second child whom they hoped could donate stem cells to reverse Henry's condition. But the child turned out not to be a suitable match and Henry died in 2002. The couple sees expanded embryonic stem cell research as critical for families like theirs.
"We feel with every further delay, more and more children are dying from diseases that could be helped with this research," Strongin said in an interview.
Her husband turned to DeGette at one point and said, "Please make it happen."
Even if the Senate approves DeGette's legislation, President Bush has threatened to use his first-ever veto to block it. But backers hope he will heed public opinion polls and back off the threat, particularly in an election year.
"The fact that a year has passed and the Senate has not taken action is crystallizing the issue and making it an election issue," DeGette said.
It already has surfaced in congressional races around the country, and the Democratic Congressional Campaign Committee is expected to target Republican congressional candidates who would block expanded research.
Schenck predicts the bill will eventually be considered, but he projects a different kind of political fallout if it passes.
"What we'll have is a battle in the election season," he said. "Do those who believe in trading some innocent human beings for the comfort and health of others win out? Or will those who (oppose) the destruction of life win out? That remains to be seen."
Pelosi Urges Senate to Act on House Passed Stem Cell Research Enhancement Act
5/23/2006 7:07:00 PM
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To: National Desk
Contact: Brendan Daly or Jennifer Crider, 202-226-7616, both of the Office of House Democratic Leader Nancy Pelosi
WASHINGTON, May 23 /U.S. Newswire/ -- House Democratic Leader Nancy Pelosi and Congresswoman Diana DeGette of Colorado joined Allen Goldberg and Laurie Strongin, founders of Hope for Henry, an organization that works to improve the life of children with threatening illnesses, to urge the Senate to pass the Stem Cell Research Enhancement Act. Below are Pelosi's remarks:
"Tomorrow, we will observe the one-year anniversary of the passage of the Stem Cell Research Enhancement Act of 2005. The champion for that act is with us here today, Congresswoman Diana DeGette of Colorado.
"The stem cell research that Congresswoman DeGette has championed has the power to cure. Every family in America is one telephone call or one diagnosis away from needing this critical research. We are hoping as we observe this one-year anniversary of the bill's passage in the House that the Senate will take action to send the bill to the President's desk and give hope to the American people. It is what Americans want in overwhelming numbers. It is about good solid science, good ethical guidelines, and about keeping Americans healthy.
"We are bound together today around a picture of Henry and his parents, Laurie Stongin and Allen Goldberg, who will tell their story. But Henry's time with his loving parents was cut far too short. Because of a genetic disease called Fanconi anemia, Henry passed away in 2002, at just 7 years old. It is in tribute to Henry and so many others that stem cell research has the power to cure that we hope this bill will be passed."
http://www.usnewswire.com/
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