New diagnostic centre for 'bubble babies'

From the story below, it looks like India is making a big step toward recognizing SCID. I hope we hear more about this initiative.


New diagnostic centre for 'bubble babies

PTI
Tuesday, January 30, 2007 17:33 IST


MUMBAI: The Institute of Immunohaematology (IIH), which comes under the Indian Council of Medical Research, will start a centre to detect congenital Severe Combined Immunodeficiency (SCID) in children.

Children afflicted with SCID are called "bubble babies". Although the number of children suffering is found to be large in the country, there is no systematic investigation or proper registry of these bubble babies, which would enable systematic healthcare for them, Director of IIH, K Ghosh told.

In order to investigate the number of cases and establish a country-wide registry, a beginning will be made soon in setting up a diagnostic centre at IIH.

"We will work in collaboration with Wadia children's hospital in Mumbai as they get at least 200 children affected with SCID," Ghosh said.

Already, IIH has sent one of its scientists to the UK to get trained in diagnosis.

"Once we succeed in establishing the centre and the technique in Mumbai, we will go for a country-wide registry and expand centres in other parts," he added.

linkbackk url: http://www.dnaindia.com/report.asp?NewsID=1076955

Some People Don't Realize How Lucky They Have It

Some people don't realize how lucky they have it when they have a baby that's healthy. They just don't have a sense of the reality of what the alternatives could be. They are too naive or isolated from the realities of childhood disorders, and the loss of a child to a disease which could've been corrected if identified at birth.

From the Columbustelegram.com
http://www.columbustelegram.com/articles/
2007/01/25/news/news5screening.txt
By Anna Jo Bratton/The Associated Press
To the Spierings, Nebraska's requirement that newborn babies undergo blood screening within 48 hours of birth is an infringement on their religious beliefs and their right to decide what's best for their four children.

The Spierings, who attend a fundamental Christian church and also follow some teachings of the Church of Scientology, wanted “that balance of our beliefs included into the births of our children,” Louise Spiering said.

The mandatory newborn screening test, in which a few drops of blood are drawn from a baby's heel, screens for dozens of rare, congenital diseases, some of which can cause severe mental retardation or death if left undetected.

Nebraska is one of just four states - South Dakota, Michigan and Montana are the others - that doesn't let parents reject the testing.

The Spierings, who are supporting legislation that would let parents decline the tests for religious reasons, wanted to observe a period of silence after their daughter Melynda's pending birth. They wanted to avoid loud noises and reduce the pain she experienced in order to protect her mental health.

There's even a 2nd family quoted with similar views:

The Spierings are not alone in opposing Nebraska's law.

Mary Anaya and her husband, Josue, believe the Bible instructs against deliberately drawing blood.

And because, according to the book of Leviticus, “the life of the flesh is in the blood,” ignoring that directive may shorten a person's life.

The children's blood is “something precious in my sight and in the sight of God and not to be tampered with lightly,” Mary Anaya said.

“I'm not asking for anyone to not screen their child,” she said. “I'm asking for the right to decide not to screen mine.”

Obviously these families have never had to deal with a child who's been permanently damaged by a metabolic disorder or life threatening infection, all because no one was able to recognize a genetic disease in a perfectly healthy looking baby. If these parents had lost a child to such a disease you can bet they wouldn't be so cavalier about this. Do they really believe that they are immune to such complications? If even one child's life can be saved by taking a few drops of blood from every infant, then it's worth it. I just hope none of these families ever have to walk in our footsteps! Or perhaps they don't want to know if their child has a life threatening disease. Perhaps they'd rather only have a perfect child. So what if that child does have a genetic disease or disorder, well then perhaps they feel that it would be better for the child to die than for them to go through the effort of raising a less than perfect child.

Plasma bank contributes $1.2 million to local economy

Web-posted Thursday, January 25, 2007
Spin doctors


Plasma bank contributes $1.2 million to local economy

By Jim McBride
jim.mcbride@amarillo.com


Donors pack the lobby at Biomat USA's plasma donor center almost daily in Amarillo, waiting to trade their blood plasma for a few dollars.

Biomat is a subsidiary of Grifols, a Spanish holding company specializing in the hospital and pharmaceutical industries. It collects blood plasma from donors at its Amarillo facility at 520 S.W. 10th Ave.

Spokesman Chris Healey said Biomat relies on repeat donors who provide blood plasma and carefully tracks them to make sure its blood products are safe.

If a donor comes in only once and doesn't come in for another appointment, that donor's plasma is tossed out.

"These people who donate plasma and who work at the centers are life-saving, life-changing."

Kathy Antilla, director of education for the Immune Deficiency Foundation
"We don't pay for their plasma. We compensate them for the time they spend in our facility. If they are donating plasma on a regular basis, we compensate them for that time," he said.

Biomat's plasma donors must fill out a detailed form and answer a series of questions about their health and personal history. They also must have a physical exam, follow special dietary regimens and comply with other instructions before they can donate.

Most donations take about 45 minutes. A staffer inserts a needle into the donor's arm, which is hooked up to sterile, disposable tubing and a centrifuge.

"It will take out a volume of roughly a coffee cup of the blood, spin it down, we collect what we want and it returns the red blood cells through the same needle line back to the individual, pulls it out again, separates and does that process until we accumulate the weight that we need," said Facility Manager Gordon Woods Jr.

The center has about 25 employees and pumps about $1.2 million a year in donor fees, taxes and employee salaries into the Amarillo economy, Woods said.

Biomat USA facilities nationwide generate about 1.5 million liters of plasma every year, enough to fill nearly two Olympic-size swimming pools.

The plasma can be turned into several products.

Biomat also tests donations for viruses and other impurities before its products are frozen and shipped to anywhere from California to Spain.

"The donor is actually paid cash at the end of their donation for their time. It's very simple, quick, and we have the purity and the safety to follow it up and make sure that that product that's going into another human being is the best on the market," he said.

A donor can give plasma up to twice a week and can earn up to $240 a month.

Healey said paying people to donate ensures they come back and gives them an incentive to remain healthy.

It also helps keep adequate blood products in supply.

"If there weren't compensated donors, there wouldn't be enough plasma therapies for sick people who need them," he said.

Human plasma is used to make life-saving medicines to treat rare diseases, such as hemophilia, primary immune deficiencies, genetic emphysema and shock, trauma or burns.

A major plasma product is known as IVIG, or intravenous immune globulin. It's a blood product that helps patients with immune deficiencies.

"That product is extracted from the plasma that we collect at the plasma centers like the one in Amarillo. It's one of the main medicines we take out of the plasma," Healey said. "Without this medicine, patients get sick; they get all kinds of infections, and they can die."

Kathy Antilla, director of education for the Immune Deficiency Foundation in Maryland, said plasma products that come from facilities like Biomat in Amarillo help patients whose bodies cannot make antibodies needed to fight off disease.

Antilla said her son, now 15, first began receiving intravenous plasma products about 10 years ago. He receives an intravenous infusion of plasma about every two weeks that replaces certain blood cells and gives him the antibodies he needs.

"As parents, we saw the change in him from the first infusion. All of a sudden he stopped coughing all night long, stopped vomiting when he ran, and there was a sparkle in his eye," she said. "These people who donate plasma and who work at the centers are life-saving, life-changing."

LinkBack URL: http://www.amarillo.com/stories/012507/bus_6505309.shtml

Please Help Baby Caden Atchley

Please Help Baby Caden Atchley
From LiveJournal by levismommy

IM BACK FROM WASHINGTON BUT I DONT HAVE TIME TO UPDATE RIGHT NOW. LOTS OF PICS LATER BUT FOR NOW I WANT TO LET YOU ALL KNOW ABOUT THIS BABY IN THE TOWN WHERE MY BROTHER LIVES, I AM HOPING SOMEONE CAN HELP HIM AND HIS FAMILY.


When I went to go visit my brother in Spokane, Wa over the past two weeks I learned about Baby Caden and how sick he is. Caden is almost 5 months old and he was born with a rare blood disease called SCID (Severe Combined Immunodeficiency). If any of you have seen the movie Bubble Boy that might help explain about this disease more. Caden can't leave the hospital because he has absolutely no immune system, even the basic comman cold could kill him. He is in desperate need of a bone marrow transplant and with the many marrow drives they have done there has been no matches. I was unable to make it to a drive while we were in Spokane but I plan on going to the local blood bank here and getting tested to see if I am a match and I am also going to see if I can get Levi tested as well. All it is is a simple mouth swab to check to see if your a match.

I am posting this on here hoping that there are some others who would want to help. Giving money donations to their family is also greatly needed as you can expect their medical bills to be huge. Here is some info on that...
Donating to the Caden Atchley Care Fund at any Bank of America location. You can also mail donations to: Josh and Melissa Atchely, PO Box 155, Colbert, WA 99005

Here is the link to Caden's page if you would like more information.

http://www.caringbridge.org/cb/viewMyStory.do?method=executeInit

If you aren't able to help in any other way at least keep Caden and his family in your prayers.

Repost this and maybe someone in your town can help.

Mandi

EDIT: I JUST REALIZED THAT THE LINK I HAVE UP ABOVE DOESNT WORK. TO VISIT HIS PAGE GO TO http://www.caringbridge.org/ AND CLICK ON VISIT ON THE TOP RIGHT CORNER. ONCE YOU DO THAT YOU TYPE IN cadenatchley IN THE SPOT FOR SITE NAME FOR THE TOP LINK. LET ME KNOW IF YOU HAVE ANY PROBLEMS.

I AM REPOSTING THIS TODAY CAUSE OF THE UPDATE.

Linkback URL: http://levismommy.livejournal.com/49792.html

He lacks immune system, but local boy full of life

He lacks immune system, but local boy full of life
From the Wisconsin State Journal
Susan Lampert Smith ssmith@madison.com
Contact Susan Lampert Smith at ssmith@madison.com or 608-252-6121.
COTTAGE GROVE - Josh Osborn was born with the same scary condition as "the boy in the bubble," but 7-year- old Josh is definitely not living his life in a bubble.

He's the boy jumping off the coffee table.

He's the boy climbing the back of the couch to capture his very patient cats, Pumpkin and Esther.

He's the boy in the second grade at Taylor Prairie Elementary School in Cottage Grove, where he gets good grades and has a bunch of friends.

Most importantly, he's a kid who is full of life as he waits for a gene therapy trial that holds promise for curing his condition, which is called severe combined immunodeficiency (SCID), and means that Josh was born without a working immune system.

His parents, Clark and Julie Osborn, are thrilled Wisconsin is the first state to study whether to test all newborns for the condition.

"This is what all SCID kids could look like," Clark Osborn said, as he watched Josh chase the cats. In fact, he added, they might look "even better, because he hasn't been cured yet."

Science has advanced considerably since David Vetter was born in Houston in 1971 and whisked immediately into a sterile bubble, where he spent 14 years waiting for a cure before he died. (Vetter's older brother died of SCID in infancy.)

Today, babies with SCID who are diagnosed early and have a bone marrow transplant before age 4 months have more than a 95 percent chance of being cured. Donated bone marrow allows them to grow a new immune system.

The problem is that most babies aren't diagnosed until they have suffered through a string of serious illnesses. Experts say SCID is the cause of many unexplained infant deaths. And the success rate of transplants falls off dramatically as the babies get older.

The Jeffrey Modell Foundation, which is launching the pilot screening with the state Laboratory of Hygiene at UW-Madison and Children's Hospital of Wisconsin in Milwaukee, estimates that testing 70,000 Wisconsin newborns each year will find one child with the condition.

You could say that it was luck Josh Osborn's SCID was discovered before he became seriously ill.

But that's not how his parents see it.

"We believe it was divine intervention," Clark Osborn said, "but people who don't agree with that would say it was luck."

Neither parent has a family history of the inherited disease. But when their 2-month-old son developed a strange lump in his groin, they took him to Urgent Care, where a doctor ordered a blood test. It showed Josh had no white blood cells. A second test confirmed those results.

Medical science advanced since the "bubble boy" era and so has the Internet.

Clark Osborn recalls that Josh was diagnosed on a Friday, and within hours, he was in e-mail contact with Duke University's Dr. Rebecca Buckley, a leading expert on the disease. Within days, Josh had an appointment with Buckley, and his parents had joined an Internet support group for the disease.

Julie Osborn and Josh moved to North Carolina for several months, and at age 5 months, Josh had a "half- match" bone marrow transplant from his mother. The transplant fixed his immune system for more than two years, until it began to fail.

Since age 3, he's been on a weekly injection of an immune-boosting drug that costs $3,200 per vial. Once a month, he gets an infusion of another drug.

Other than that - and the fact he stays home when chicken pox is going around school - Josh has been a healthy and happy boy.

His parents say that the Dean Health Plan has been great about covering his medicine and referring him to Duke. But they hope for a permanent cure from a gene therapy experiment set to begin soon at the National Institutes for Health.

They hope the pilot study will become permanent, so that if a baby is born with SCID in Wisconsin, the child will have as good or better a chance at a healthy, relatively normal life as Josh.

Finding that one child a year is a matter of life and death, the difference between life in a bubble and a life full of life.



Linkback URL: http://www.madison.com/wsj/home/column/
index.php?ntid=115708&ntpid=1#

Tests May Help End 'Bubble Boy' Disease

Tests May Help End 'Bubble Boy' Disease
By LAURAN NEERGAARD, AP Medical Writer
11:23 AM PST, January 15, 2007

WASHINGTON -- Doctors were stumped. Tests for meningitis, cancer, a list of other diseases all were negative -- yet just days after a sudden high fever sent 8-week-old Anthony James Mingione to the hospital, he died. An autopsy uncovered the lethal secret: Anthony was born without a working immune system. A rare genetic disorder known as the "bubble boy disease" rendered him vulnerable to the most minor of germs.

Now Wisconsin is about to begin the nation's first experiment at testing newborns for this killer, officially named SCID, in hopes of giving babies like Anthony a chance at lifesaving treatment -- even as scientists ask how many infant deaths attributed to infections really might be due to the immune destroyer.

"These people look like the Gerber baby until they get sick," says Dr. Rebecca Buckley, a SCID specialist at Duke University and longtime advocate for newborn screening.

"I am more concerned than ever that a lot of these babies never make it to the pediatrician, much less an immunologist."

Between 40 and 100 U.S. babies are estimated to be diagnosed each year with SCID, or "severe combined immunodeficiency disease." The best-known victim was Houston's famous "bubble boy" who lived in a germ-proof enclosure until his death at age 12 in 1984.

But no one knows how often SCID is missed. In a few dozen more cases? Another 100?

"We think there's a lot more out there and that the infants just die," says Dr. Jack Routes, a pediatrician at Children's Hospital of Wisconsin. He is heading the newborn-screening experiment, with funding from a parents' advocacy group, the Jeffrey Modell Foundation, that may help answer that question.

Catching the disease before a baby gets sick means a far better chance that treatment is successful, explains Dr. Jennifer Puck of the University of California, San Francisco.

Puck developed the first screening test that promises early diagnosis. This winter, Wisconsin's state laboratory begins the first phase of its pilot project, practicing with Puck's test on anonymous newborn blood samples. If no problems crop up, later this year Routes and colleagues will begin a study that attempts to screen all Wisconsin newborns for SCID -- to see how accurate it really is, and track what happens to those diagnosed.

"I know this will change the course of SCID," says Anthony's mother, Tara Mingione of Long Island, N.Y., who has pushed for screening since his death two years ago. "Anthony had absolutely no chance to live unless he was tested at birth."

Today, all U.S. newborns are tested for a variety of rare but devastating genetic diseases -- using a single spot of blood from the baby's heel a day after birth -- to catch the few thousand who need fast treatment to avoid serious problems.

Not yet on that list: SCID and other "primary immunodeficiency" diseases, meaning children are born with faulty immune-system genes. There are different SCID subtypes, but the end result is that babies can't produce important disease-fighting cells called T cells.

Without treatment, they usually die before their first birthday. Bone marrow transplants can provide them with stem cells that take root and begin producing T cells after all, curing some children and greatly extending the lives of others.

But Duke's Buckley calls age key: She reports 95 percent survival in SCID babies transplanted before they're 3 months old -- almost always those born to women who know SCID has struck a relative, and thus seek at-birth testing. After that age, survival plummets because the babies are so sick going into surgery.

Moreover, total costs for transplanting a baby shortly after birth are about $100,000, Buckley says, compared with bills that can reach $1 million after they get sick.

When doctors suspect a baby has SCID, they can check a vial of his or her blood to see if T cells are present. But routine screening -- checking those dried blood spots -- requires a whole different approach.

Puck had to create a kind of DNA test to detect bits of genetic material that signal T cells' maturation, and thus should be visible only in healthy babies.

It's not perfect, cautions Robert Vogt, a research chemist at the Centers for Disease Control and Prevention. But it seems accurate enough to study in thousands of babies, scientists concluded at a November meeting sponsored by CDC and Modell Foundation. Vogt says California, New York and Missouri are among a handful of other states considering pilot screening projects.

Also, CDC is funding California health officials to use the new test to check stored blood samples from nearly 2,000 babies who died before 18 months of age -- probing whether SCID gets missed.

Mingione is convinced it does, because she almost turned down the autopsy that finally diagnosed Anthony. To avoid chancing another tragedy, last spring she adopted a healthy baby boy.

* __

EDITOR'S NOTE -- Lauran Neergaard covers health and medical issues for The Associated Press in Washington.



backlink URL: http://www.latimes.com/news/nationworld/politics/wire/
sns-ap-healthbeat-bubble-boy-disease,1,4087507.story?
coll=sns-ap-politics-headlines

Parents’ pride at seeing their brave Misha start school

Parents’ pride at seeing their brave Misha start school

A BRAVE little girl has a very special reason to celebrate her first ever day at school.

For Misha Butler has had to put up with a lot more than most five-year-olds after being born without an immune system.

The girl who became Bredenbury Primary School's newest pupil on Monday spent the first years of her life in a specialised hospital isolation unit.

She was given a bone marrow transplant when she was just eight weeks old, but this did not prevent a series of further complications and another gruelling transplant a year later.

Misha remained in hospital and was only allowed to go home to Upper Sapey, near Bromyard, after her second birthday.

Even then, Misha was still in and out of hospital as doctors constantly monitored her progress.

But this week, the youngster managed what her parents, Tracey and Terry, feared she might never achieve - and went to school.

Her father, Terry, said: "It is a big occasion for all of us. Misha has been looking forward to it and we, as parents, are incredibly pleased and proud that our little girl has come so far.

"Misha still has many problems. She cannot walk, is blind in her left eye and has no hair or eyebrows.

"It will be an ongoing thing for the rest of her life with lots more hospital visits to come, but her immune system is now up to about 90% and she is going to school! What she is doing today really is incredible."

Misha was treated at the Children's Bone Marrow Transplant Unit in Newcastle-upon-Tyne - one of only two units in the UK that can give babies like Misha the meticulous medical and nursing care they need.

The treatment was paid for by the NHS, but a charity group called the Bubble Foundation was formed to raise money for medical research and staff training to help children born without immune systems.

Funds raised also pay for more simple things like accommodation to house mothers and fathers visiting their sick children.

Terry, aged 31, and his brother, Harry, 33, are now planning to trek across Peru to raise money for the Bubble charity.

"The hospital does not get the attention it deserves because it is not as well known as Great Ormond Street," said Terry. "But it is an amazing place and if it was not for that hospital, there is absolutely no way Misha would be with us today."

During pregnancy, doctors told Terry and Tracey there was a one in four chance that Misha could be born with a rare immune deficiency similar to the type that took the life of their first son, Nicholas, when he was just three-years-old.

"We were not quite sure what to do when we were told that, but we could not go through with an abortion and we are so, so pleased with our decision now," Terry said.

Within a few weeks of Misha's birth, a bone marrow donor was found in America. It was such a close match that doctors said it was like a sibling.

But even this was not enough to stop a stressful and draining two-year period where Misha was kept in a high-tech sterile space known as a bubble.

Every time Terry and Tracey wanted to get close to Misha, they had to scrub for three minutes and wear a special gown because even the common cold passed on by a mother's kiss could have been fatal.

However, slowly and surely Misha grew in strength and was allowed to go to a half-way-house to get used to being out of a hospital.

When she returned to the Herefordshire countryside a few weeks later, she was still susceptible to the mildest illness and was a constant visitor to hospitals in Hereford, Birmingham and Newcastle.

But the stresses and strains of the last five years were all put to one side on Monday morning when Terry and Tracey took Misha to school.

They are both extremely grateful to Bredenbury Primary School, which has arranged for a special support worker to sit next to Misha in the classroom.

And as Misha faces a new challenge, her father and uncle are preparing for one of their own.

The pair have been given free Halo membership to use Bromyard Leisure Centre for three months as they prepare for the 10-day South American trek.

Terry said they hoped to raise somewhere in the region of £20,000, and are currently busy organising bingo nights in Bromyard and auctions of sporting memorabilia, which includes a signed rugby shirt from Newcastle Falcons.

Anyone wishing to help Terry with either financial donations or raffle prizes can call the Bubble Foundation on 0191 256 3460.

7:00am Sunday 14th January 2007

Linkback URL: http://www.herefordtimes.com/
display.var.1114244.0.parents_pride_at_seeing_their
_brave_misha_start_school.php

First Demonstration of "Apparently Fully Curative" Gene Therapy

First Demonstration of "Apparently Fully Curative" Gene Therapy
Medscape Medical News
by: Zosia Chustecka


December 11, 2006 (Orlando) — Success with gene therapy in infants with severe combined immunodeficiency (SCID) reported at the American Society of Hematology (ASH) 48th Annual Meeting and Exposition spells "good news for the whole field of gene therapy," say the researchers.

The results come from a trial of 8 children (aged 7 months to 5.5 years) with SCID caused by a defective gene for adenosine deaminase (ADA). These infants are so immunocompromised that any infection is potentially life threatening, and they often spend their short lives encased in a plastic "bubble." They were treated with transduced autologous hematopoietic stem cells transfected with the ADA gene, inserted via retroviral-mediated transfer.

"All of the children are currently healthy and thriving," lead researcher Alessandro Aiuti, MD, from the San Raffaele Telethon Institute for Gene Therapy, in Milan, Italy, told the meeting. "They are living normal lives and are going to school and kindergarten." They have shown no adverse events related to the gene transfer, and none have developed severe infections.

All of the infants with longer follow-up who have a completely reconstituted immune system do not require any treatment, so it appears that the gene therapy is "curative," Dr. Aiuti told Medscape. However, this reconstitution takes time, and before the process is completed, patients are given immunoglobulins, he added. Before entry into the trial, 6 of 8 children were on ADA enzyme-replacement therapy.

"This is the first demonstration of an apparently fully curative gene-therapy transplant," Stephen Emerson, MD, PhD, from the University of Pennsylvania, in Philadelphia, told Medscape. These children have gone from "bubble to playground," he said.

Speaking as the moderator of an ASH press conference at which this trial was highlighted, Dr. Emerson said the results are good news for the whole field of gene therapy. "In this trial, the gene therapy offered tremendous benefits with no toxicity, and it offers real promise for the future for the potential of gene therapy in more common and more complex diseases, such as sickle-cell anemia and thalassemia."

Also speaking at the press conference, Dr Aiuti explained that previous attempts at gene therapy for ADA-SCID have not been totally successful, as the children continued to need enzyme-replacement therapy (with pegylated ADA). One of the innovations in their own protocol was the use of the cytoxic agent busulfan, which helps the engraftment process by "making room for the new stem cells," he commented. Busulfan was administered at 2 mg/kg per day on days 3 and 2 prior to the transplant and resulted in a transient myelosuppression in most patients, although in 2 patients this myelosuppression was prolonged. "It appears that the greater the extent of neutropenia, the better the engraftment," Dr Aiuti commented.

It appears that the gene therapy results in persistent gene correction, Dr. Aiuti commented. Long-term engraftment of the transduced cells was demonstrated by stable multilineage marking: T-cell counts were normal, and there was a restoration of T-cell function. There were also metabolic benefits — the children did not need treatment with pegylated ADA enzyme replacement, and 7 of 8 patients showed an increase in both height and weight. "The 1 patient who didn’t was treated at an older age, so there was probably more damage there," Dr. Aiuti said.

The median follow-up is 3 years, and the longest is 6 years, but there is real hope that the effects will "last for a lifetime," he said.

Dr. Aiuti and colleagues are continuing with this approach and have so far treated 1 other patient. They concluded that the data so far "confirm the safety and the efficacy of gene therapy in improving immune and metabolic function in children diagnosed with ADA-SCID" and suggested that this approach "may represent a viable solution to reduce the mortality rates associated with SCID in newborns."

ASH 48th Annual Meeting and Exposition: Abstract 200. Presented December 11, 2006.

backlink url: http://www.medscape.com/viewarticle/549132?rss
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Stem Cells Discovered in Amniotic Fluid

Stem Cells Discovered in Amniotic Fluid
By PAUL ELIAS
AP Biotechnology Writer


They reported they were able to extract the stem cells from the fluid, which cushions babies in the womb, without harm to mother or fetus and turn their discovery into several different tissue cell types, including brain, liver and bone.

But Dr. Anthony Atala, head of Wake Forest's regenerative medicine institute and the senior researcher on the project, said the scientists still don't know exactly how many different cell types can be made from the stem cells found in amniotic fluid. The scientists said preliminary tests in patients are years away.

The cells from amniotic fluid "can clearly generate a broad range of important cell types, but they may not do as many tricks as embryonic stem cells," said Dr. Robert Lanza, chief scientist at the stem cell company Advanced Cell Technology. "Either way, I think this work represents a giant step forward for stem cell research."

Dr. George Daley, a Harvard University stem cell researcher, said the finding raises the possibility that someday expectant parents can freeze amnio stem cells for future tissue replacement in a sick child without fear of immune rejection.

Nonetheless, Daley said, the discovery shouldn't be used as a replacement for human embryonic stem cell research.

"While they are fascinating subjects of study in their own right, they are not a substitute for human embryonic stem cells, which allow scientists to address a host of other interesting questions in early human development," said Daley, who began work last year to clone human embryos to produce stem cells.

Atala said the research reported in the scientific journal Nature Biotechnology expands far beyond similar work.

At a heart research conference in November, Swiss researcher Simon Hoerstrup said he managed to turn amniotic fluid stem cells into heart cells that could be grown into replacement valves. Hoerstrup has yet to publish his work in a scientific journal.

"Our hope is that these cells will provide a valuable resource for tissue repair and for engineered organs as well," Atala said.

It took Atala's team some seven years of research to determine the cells they found were truly stem cells that "can be used to produce a broad range of cells that may be valuable for therapy."

Atala said the new research has found even more promising stem cells with the potential to turn into many more medically useful replacement parts.

"We have other cell lines cooking," Atala said.

The hallmark of human embryonic stem cells, which are created in the first days after conception, is the ability to turn into any of the more than 220 cell types that make up the human body. Researchers are hopeful they can train these primordial cells to repair damaged organs in need of healthy cells.

However, many people, including President Bush, oppose the destruction of embryos for any reason. The Bush administration has restricted federal funding for the embryo work since 2001, leading many scientists to search for alternative stem cell sources.

The advance is the latest in the so-called regenerative medicine field that has sprung from Atala's lab in Winston-Salem, N.C.

In April, Atala and his colleagues rebuilt bladders for seven young patients using live tissue grown in the lab.

In the latest work, Atala's team extracted a small number of stem cells swimming among the many other cell types in the amniotic fluid.

One of the more promising aspects of the research is that some of the DNA of the amnio stem cells contained Y chromosomes, which means the cells came from the babies rather than the pregnant moms. ___

On the Net:

Wake Forest regenerative medicine institute: http://www.wfirm.org/

backlink url: http://www.newsday.com/news/health/
ats-ap_health10jan08,0,7632149.story?track=rss

Spread The Love

Spread the Love
Posted in the blog by Jennie at Four Feet More:

Catheroo, posted about her dear friend, Lynette, and the battle she and her husband are facing to save their son, Sebastian. Sebastian has a rare genetic disease called Severe Combined Immunodeficiency (SCID). This disease means that Sebastian basically does not have an immune system and common illnesses which we recover from quickly could prove fatal for him.

There is no cure for SCID, but there are some promising treatments. Sebastian has been invited to take part in a clinical trial being conducted in Italy. This spring, he and his family will relocate from their Bay Area home to Milan, Italy, where they will live for 6 months while Sebastian is undergoing treatment. While much of the treatment costs will be covered by medical grants, a fund has also been set up to help cover the additional costs they will incur while overseas.

If you are interested in learning more about Sebastian's story, please visit Sebastian's Space on the web. You can help out by making a donation to Sebastian's fund, posting a link to his space on your blog, or by sending a supportive comment to his parents. I'm sure they are approaching this relocation and clinical trial with both fear and hope, so let's send a little love their way!

Backlink URL: http://pereydaz.blogspot.com/2007/01/spread-love.html

A Favor

From the blog by catheroo

To my loyal readers and new visitors,

You can read my long and rambling post below, or take a shortcut here and offer any help you can.

Lynette is my oldest friend. That is to say, I have known her longer than any other friend I have (she’s younger than I am, really). We met in the summer between 5th and 6th grade and we were practically inseparable throughout junior high and high school. Her mom drove us to toilet paper the house of a cute boy. We took French class together with Madame Schaag “Allez, ne discute pas tout le temps!”. We swindled Mr. Lees into letting us retake our flunked algebra tests. We worked together at Marshalls, flirting with every newly hired boy who came through the automated doors. The same weekend we graduated from high school, we jetted off to Waikiki for a week of tropical fun (the drinking age was just 18 then). Sun Country Wine Coolers, Mai Tais, and Blue Hawaiis sustained us on that trip. We never puked, and we weren’t hungover until 2 days after we got back to California. Ahh, those were the days.

See?

In 2002, Lynette and her husband Chris welcomed a baby boy into their lives. Sebastian was born prematurely, and spent much his early life in the hospital. I did not know what to do for Lynette to make things easier for her, but I recall one night when we caught up on the phone, I commiserated with her, sharing stories of hospital rooms and doctors and nurses and IVs (I was taking care of Jamie back then). I also remember at that time, wishing that we could have been discussing how cute the new guy in Marshall’s shoe department was, or the latest Adam Ant video, or some such nonsense. But we were adults now and we were dealing with real life.

Today Sebastian is a cute and cheerful 4 1/2 year-old boy. He is also a boy with a rare genetic disease called Severe Combined Immunodeficiency (SCID). What this means is that Sebastian doesn’t really have his own immune system. He is highly susceptible to picking up infections and easily getting sick. Very sick. What would be an inconvenient cold to us could be fatal to Sebastian.

Lynette and Chris have researched treatments and possible cures for their little boy. They found a clinical trial in gene therapy and Sebastian has been accepted to participate. Lynette, Chris, and Sebastian will leave their Bay Area home, friends, and family and move to Milan, Italy in the spring, for a 6-month course of treatment for Sebastian. While a portion of the medical expenses will be covered by grants, a fund has been set up in Sebastian’s name to help pay for additional costs they will incur while overseas, and U.S. expenses such as the mortgage payments on their home.

If you would like to help out my dear friend, please send a donation to

The Sebastian Westfall Fund
c/o The First Republic Bank
1625 The Alameda, Suite 100
San Jose, CA 95126

EDITED TO ADD: If you’re not in a position to help financially, please keep the Westfall family in your thoughts and prayers, and send them good vibes and mojo in lieu of monetary support. And if you’d like to link to Sebastian’s blog or add it to your blogroll, please fell free to spread the word. Thank you!

Backlink URL: http://www.catheroo.com/2007/01/05/a-favor/

Charity Calendar Plea

Borehamwood
This is Hertfordshire
Charity calendar plea
By Emma Hutchings

The makers of a charity calendar launched to raise money to send a boy with a life-threatening immune system deficiency away on holiday are hoping to sell out.

Colleagues at Cardif Pinnacle have so far raised £5,000 for children's charity Wooden Spoon, and an additional £1,300 to pay for five-year-old Tommy Cash-Hutchin and his mother Kelly, of St Paul's Close, Borehamwood, to go on holiday.

The calendar features employees of the finance firm, which is based off the A1, dressed up as characters from Hollywood blockbusters.
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They are hoping to raise a further £700 to reach their target of £2,000 - which will mean Tommy's grandmother can help care for him on the trip.

Calendar organiser Carl Warr, 28, of Allerton Close, Borehamwood, said: "This will be Tommy's first ever holiday with his mother and will be give them something to look forward to after having a month-long spell of chemotherapy.

"I want to thank all the people who have bought the calendar.

"We're looking to get all the high street businesses to embrace the cause and purchase one calendar each.

"We're pretty confident we can reach our target."

Tommy was diagnosed with severe combined immunodeficiency (SCID) when he was three months old which means he is unable to fight off infections. He needs a bone marrow transplant if he is to lead a normal life and survive into adulthood.

But there are currently no matches for him on the donor register, so his only hope is for a suitable donor to come forward soon.

u Anyone wishing to buy a calendar can contact Carl Warr at Cardif Pinnacle on 020 8207 9000 or pop in to The Community Shop in Leeming Road, Borehamwood.

4:40pm Thursday 4th January 2007

Linkback URL: http://www.thisishertfordshire.co.uk/news/borehamwood/
display.var.1104540.0.charity_calendar_plea.php

AAP ENCOURAGES PUBLIC CORD BLOOD BANKING

AAP ENCOURAGES PUBLIC CORD BLOOD BANKING

Below is a news release on a policy statement appearing in the January issue of Pediatrics, the peer-reviewed, scientific journal of the American Academy of Pediatrics (AAP). To receive the full text of this report, please contact the AAP Department of Communications.

For Release: January 2, 2007, 12:01 am (ET)

CHICAGO - Cord blood stem cell banks can provide an invaluable service to those afflicted with leukemia and immune disorders. The American Academy of Pediatrics (AAP) encourages families to donate their newborn’s cord blood, which is normally discarded at birth, to cord blood banks (if accessible in their area) for use by other individuals in need. Storing cord blood at private banks for later personal or family use as a general “insurance policy” is discouraged.

According to the revised AAP policy statement, “Cord Blood Banking for Potential Future Transplantation,” the chances of a child needing his or her own cord blood stem cells in the future are estimated to range from one in 1,000 to one in 200,000. Private cord blood banks target parents at an emotionally vulnerable time when the reality is most conditions that might be helped by cord blood stem cells already exist in the infant’s cord blood. However, the AAP does recommend private cord blood banking for parents who have an older child with a condition that could potentially benefit from transplantation, such as a genetic immunodeficiency.

See: frequently asked questions about cord blood banking

The policy details recommendations for private or public cord blood banks, such as obtaining written permission for obtaining cord blood prior to the beginning of labor; refraining from collecting cord blood during complicated deliveries; complying with standards set by federal and state agencies; and actively recruiting minorities to donate cord blood.

Parents who decide to donate or store an infant’s cord blood should be informed that genetic and infectious disease testing will be performed on the cord blood and that they will be notified of any abnormalities that are found. Likewise, parents should notify cord blood banks if their child develops a genetic, immunologic or malignant condition so their cord blood is not used for transplants.

The American Academy of Pediatrics is an organization of 60,000 primary care pediatricians, pediatric medical subspecialists and pediatric surgical specialists dedicated to the health, safety and well being of infants, children, adolescents and young adults.

LinkBack URL: http://www.aap.org/advocacy/releases/jan07cordblood.htm