Tuesday, October 26, 2010

Smith Introduces House Resolution on Spina Bifida

October Is Spina Bifida Awareness Month; Thousands of Americans Live with Permanent Disabling Birth Defect

Oct 02,2010 - Washington - Spina bifida, a birth defect that threatens millions of Americans, is the focus of a House resolution, H. Res. 1664, introduced this week aimed at both raising public awareness of the disease and urging the Secretary of Health and Human Services (HHS) to launch a federal effort to improve access to health care facilities for individuals with disabilities.
Link to complete story

Breathe carefully: air emissions of benzene may cause birth defects

Breathe carefully: air emissions of benzene may cause birth defects.
Environmental Health News

Pregnant women living in Texas neighborhoods with higher air levels of benzene – a pollutant often released from oil refineries and traffic exhaust – are more likely to have babies with neural tube defects. Women living in the areas with the highest benzene levels had a two times greater risk for their children to be born with spina bifida. This study is the first to examine the link between environmental levels of benzene and neural tube defects in newborns and adds to the growing body of evidence linking prenatal air pollution exposures to harmful effects on the developing fetus.
Click here for complete story

Wednesday, September 29, 2010

Cuddly dinosaur has a message for children

A BIG blue dinosaur taught children about spina bifida during a visit to Fairfax Reserve, at Harrington Park, recently.

To educate children about what the condition is, Spinasaurus has a gap in his spine, a defect that occurs in 4.6 in every 10,000 pregnancies in Australia. Link to article

Disability Activist Creates Funds 4 Spina bifida

"FUNDS 4 SPINA BIFIDA", A Petition Urging Congress To Increase Funding Towards Spina Bifida Research, Education & Programs.

Online PR News – 27-September-2010 – Funds 4 Spina bifida was created by Disability activist & American Poet Robert M. Hensel in order to help raise awareness to this disabling birth defect. Right now, there are 166,000 People living in the United States with this condition, and without the proper education and funding these numbers could become much higher.

Spina bifida occurs within the first 28 days of pregnancy, even before a Woman may know shes pregnant. That is why every Woman of childbearing age should educate themselves about the importance of taking folic acid. Link to article

Monday, September 27, 2010

Calls for more spina bifida awareness

Calls for more spina bifida awareness
Bendigo Advertiser - ‎Sep 3, 2010‎

Eight years ago, Mark and Nicole Logan lost their son shortly after he was born with severe spina bifida myelomeningocele. Joshua Logan did not survive past... Link to article

Teen Masters Double Back Flip In Wheelchair

Teen Masters Double Back Flip In Wheelchair
By Shaun Heasley
Disability Scoop
September 14, 2010

Spina bifida isn’t stopping Aaron Fotheringham who recently became the first person to do a double back flip in a wheelchair. Link to article and video

Related Stories:

Vitamin 'may help prevent' spina bifida

Vitamin 'may help prevent' spina bifida
By Eleanor Bradford, Health Correspondent
BBC Scotland
Sept 9, 2010

Scientists have begun a study to determine if an everyday vitamin supplement could help prevent one of Britain's most common birth defects.

Every year about 100 children in the UK are born with spina bifida and other neural tube defects.

Prospective mothers are advised to take folic acid as a way of preventing the condition. Link to article

London scientists in new spina bifida study - Inositol

By Eleanor Bradford
Health Correspondent, BBC Scotland
September 9, 2010

Scientists are trying to find out whether a simple vitamin supplement could help to prevent one of the commonest birth defects in the UK.

Every year around 100 children in the UK are born with Spina Bifida and other neural tube defects. Many more pregnancies are terminated when it's diagnosed by an ultrasound scan.

Link to article (and video)

Chronically Ill, and Covered

Chronically Ill, and Covered
Steve Hebert for The New York Times

Published: September 22, 201

Joe and Mary Thompson had agreed to adopt Emily before her birth in 1999, and it never occurred to them to back out when she was born with spina bifida. But that same year, their residential remodeling business in Overland Park, Kan., went under, prompting job changes that left the family searching for health coverage with a child who was uninsurable.

Link to article

FDA Approves Oral Contraceptive Containing Folate

Robert Lowes
Medscape Medical News

September 24, 2010 — The US Food and Drug Administration (FDA) today approved an oral contraceptive — the first of its kind — that is intended both to prevent pregnancy and reduce the risk for neural tube defects in newborns if and when users of the pill give birth.

Link to article

Thursday, May 20, 2010

Vietnam, US still in conflict over Agent Orange

Vietnam, US still in conflict over Agent Orange

Statesman Journal - Ben Stocking - 1 day ago

Children of exposed servicemen who were born with spina bifida also receive a medical benefit. “American and Vietnamese Agent Orange victims haven't been ...

Vietnam, US still in conflict over Agent Orange

Vietnam, US still in conflict over Agent Orange

Statesman Journal - Ben Stocking - 1 day ago

Children of exposed servicemen who were born with spina bifida also receive a medical benefit. “American and Vietnamese Agent Orange victims haven't been ...

8-year-old deals with cancer, spina bifida

8-year-old deals with cancer, spina bifida

The Lincoln Journal Star

"For 8-year-old Elliott, life is all about playing with friends, teasing his teenage sisters, Sarah and Piper, and enjoying life regardless of what fate throws his way, be it spina bifida, seizures or now brain cancer."

Wednesday, February 17, 2010

Dutch Debate Ultrasound Use as Late Abortions Skyrocket

Monday February 15, 2010

Dutch Debate Ultrasound Use as Late Abortions Skyrocket

By Kathleen Gilbert

AMSTERDAM, February 15, 2010 (LifeSiteNews.com) - Because late abortions have doubled since the government began offering ultrasound screenings to pregnant women at 20 weeks, some Dutch lawmakers are hoping to change the standard use of the tool, according to the Dutch daily newspaper NRC Handelsblad.

Gynecologist Hajo Wildschut told the paper that many women decide to abort their child after the 20-week ultrasound because it is at that stage that defects such as Down syndrome and spina bifida can be observed. That leaves women four weeks to decide whether to have the child killed before the legal cutoff for abortion at 24 weeks.

The Dutch government introduced the 20-week ultrasound for all pregnant women in 2007. Since then, the number of abortions between weeks 20 and 24 have doubled, according to data published by the Netherlands Health Care Inspectorate Thursday.

"Most of these children are wanted," said Wildschut. "But then the pregnancy takes such a tragic turn. The parents are struggling terribly with the questions: can we raise a child who has spina bifida or Down syndrome? Can we live with the decision of ending this pregnancy?"

Some lawmakers are pushing to delay the ultrasound: members of parliament with the pro-life Christian party, ChristenUnie, want to postpone the official ultrasound to the 24th week.

"The life of a person with disabilities is a valuable life," ChristenUnie MP Esmé Wiegman said last Tuesday. "We should be able to count on a careful approach when the life of an unborn child with a disability is involved."

If her proposal to move the ultrasound fails to get support, Wiegman said she would work to cap legal abortion at 18 weeks.

Experts have also concluded that the ultrasound was one reason there were no reports of euthanizing newborn babies in 2008, as children who would have been euthanized for severe birth defects instead were killed in the womb. The euthanasia of newborn infants is permitted in the Netherlands under certain conditions set forth in the so-called Groningen Protocol.

Some have also complained that the ultrasound was leading parents to kill children with minor defects, such as cleft lip, that could be corrected with a just few surgeries.

"We explain the child can be helped by undergoing three or four operations. And we will supervise the child for years, watch it grow up. We will never tell the mother: ‘this life is not worth it,'" said Marjan Nijhuis-Kloen, a nurse and cleft lip expert at a hospital in Nijmegen.

See related LifeSiteNews.com coverage:

Researcher to Dutch Government: Allow Euthanasia for Newborns Based on Foreseeable Suffering

Former Dutch Health Minister Admits Error of Legalizing Euthanasia

Dutch Euthanasia Numbers Rise

Tuesday, January 5, 2010

Tengion plans $40 million IPO

Tengion plans $40 million IPO
December 28, 2009 by MassDevice staff

Tengion Inc. rides a late-year surge in initial public offering filings to launch a bid for $40 million in fresh funding for its organ and tissue regeneration process.
Tengion logo

Joining what is quickly becoming a mini-stampede toward the public markets, a suburban Philadelphia biotech unveiled plans for an initial public offering of stock.

The company, Tengion Inc. of East Norriton, Pa., is working to commercialize a process that coaxes the body into producing its own replacement organs. Early testing has demonstrated some success rebuilding bladder tissue in children with spina bifida and Tengion officials are now hoping that those encouraging results will attract sufficient market support to finance additional clinical trials.

According to its preliminary prospectus filed Dec. 23, the company expects to raise up to $40.25 million in gross proceeds from the IPO. Other terms for the offering are purposely left vague, although it's clear that a sizable portion of the deal will go to pay off $24.3 million in loans coming due by April 2012 and requiring up to 12.26 percent in yearly interest costs.

Existing investors, which include Boston's Bain Capital and Oak Investment Partners of Westport, Conn., obviously are also eager for an IPO to loosen money they've had tied up in Tengion since August 2005. Overall, venture funds and institutional investors have a total of $184.2 million invested in the company, including a $33 million Series C funding round completed in September, 2007, and a $50 million B-round in June, 2006.

Liquidity desires and a rebounding market, meanwhile, appear to be spurring a surge in IPO filings after a long dry spell. With a week left in the current quarter, 62 companies have filed plans for first-time offerings — representing more than half of the year's total and marking the strongest quarterly activity in nearly two years, according to data gathered by Renaissance Capital.

Neural tube birth defects on rise in Utah

Neural tube birth defects on rise in Utah
Salt Lake Tribune - Heather May

Thousands of Utah women are getting free bottles of multivitamins in the hopes that none of their future children will develop deadly but preventable neural tube defects.

The 26,000 bottles of vitamins, paid for by a federal grant and through a private donation by the group Vitamin Angels, contain 400 micrograms of folic acid. The B vitamin helps a fetal neural tube properly develop into the brain and spinal cord, according to the March of Dimes.

While the importance of folic acid was common knowledge a few years ago, fewer women know it now, according to the Utah Department of Health.

"We have a new cohort of women coming into this group every year ... who haven't heard this message," said Amy Nance, the Utah Birth Defect Network at the health department.

That may be why the number of Utah babies born with neural tube defects is on the rise. Up to 25 more babies were born in 2008 with defects like spina bifida or the deadly anencephaly (in which the brain fails to develop) than in the late-1990s.

Seventy percent of neural tube defects are preventable with the well-timed digestion of folic acid, according to the March of Dimes. The vitamin must be taken in the first few weeks of pregnancy when the neural tube is developing -- before women know they are pregnant.

Since one-third of Utah pregnancies are unintended, the health department is advocating all women of childbearing age take the supplement everyday.

It is using its grant money to focus on women in the federal Women, Infants and Children (WIC) program, which provides food vouchers and nutritional counseling.

The health department targeted WIC clients because they are an easy group to reach and their demographics also align with the mothers who have had babies with neural tube defects: Most are under age 30, and one-quarter are Latino, whose babies are up to two times more likely than others in the United States to have such a defect.

Since October, WIC offices in Box Elder, Cache, Rich, Salt Lake, Tooele and Wasatch counties have been giving out a 3-month supply of multivitamins to women who had had a baby six weeks before. One in five pregnancies in Utah occur within 15 months of a prior birth; 5 percent within 6 months.

The WIC offices also have a new DVD on folic acid to play in their waiting rooms, to target all women using WIC services.


Xiao to visit Mumbai to treat spina bifida patients

Xiao to visit Mumbai to treat spina bifida patients
India Today - Nishat Bari - ‎Dec 28, 2009

Dr. Chuanguo Xiao of China has developed a nerve re-routing surgical procedure to treat patients suffering from Spina bifida, a disorder of the spine, as well as other related spinal injury disorders. He had been invited to Mumbai for a week by Kokilaben Dhirubhai Ambani Hospital to conduct the surgery on patients as well as train doctors about the procedure.

Spina bifida is a congenital defect where the patient has no sensation or control of his bladder or bowels. Though people have this defect since birth, spinal injuries can also lead to the condition. Patients are dependent on diapers or catheter (a tube inserted into the bladder to drain bodily fluids) to cope with the condition and there is no other treatment for it.

Xiao has successfully treated the condition in over 1500 patients by re-routing the nerves from the bladder and bowels to the thighs. This is done using a part of a nerve from the patient's leg. The result is that the patient can activate his bladder or bowels on his own by scratching a spot on his thigh.

He has conducted 8 successful surgeries at Ambani Hospital with the help of a core team, comprising of Dr. Amrish Vaidya, Dr. Ketan Parikh, Dr. Abhaya Kumar and Dr. Poornima Shah. The surgeries have been sponsored by the hospital and the cost of the procedure is expected to be ascertained within 2-3 weeks. The hospital already has a long list of people who have enlisted for the surgery. In the US the surgery costs $45,000.

It takes about 5-6 months after the surgery for the nerves to grow before a result can be seen. In certain cases it can take almost 2 years before a change is noticed. The success of the surgery varies if the patient has undergone prior surgeries on the spine. In such cases the nerves have already been weakened by surgery and can take longer to grow. Xiao says that if the Xiao Procedure is carried out at an early age, the patient can even regain sensation of the bladder and bowels.

Xiao has been researching the procedure for the last 10 years, the first 8 on animals. He performed the first surgery on a person in China in 1995. In some of his first patients he noted a slight weakness in the patient's leg post the surgery. This was because he would use a whole nerve from the leg for the procedure. However, he has modified the technique and now uses only half or one third of the nerve, and says there are no side effects of the procedure.

Xiao is a professor and Chairman of the Department of Urology at Union Hospital, Tongji Medical College in China. He became interested in treatments for spinal injuries while he was a resident doctor at Hubei Medical College in China in 1976 when a huge earthquake killed thousands of people. Many of the victims suffered from spinal injuries. He has performed surgeries in several countries including USA, Germany, Denmark, Australia, and has been invited by several more including Philippines, Canada and Japan.

There are 80,000 new cases of Spina bifida in China each year. In India there are 25000 to 30000 new cases a year, or 5-7 cases per 1000 births. It can be diagnosed at birth as the children born with it have a lesion on the lower back.

Accidental Discovery Advances Understanding of Spinal Cord Birth Defects

Accidental Discovery Advances Understanding of Spinal Cord Birth Defects

A report published in the December 6 issue of the journal Nature Cell Biology revealed a link between certain genetic mutations and early development of spinal cord disorders in mice. Scientists from the Johns Hopkins University School of Medicine and the University of California-Berkeley made the accidental discovery while searching for genes that guide the development and routing of the billions of neurons that make up the nervous systems of mice.

The study initially involved creating random mutations in mouse genes and then studying the offspring for nervous system defects. While examining thousands of mouse embryos as part of the study, graduate student Janna Merte noticed one of them had a spinal cord that had failed to develop from a flat sheet of cells into a tube.

Healthy spinal cord cells in mouse embryos develop at first in a flat layer of cells which then rolls up into a tube to begin forming the spinal cord. In spina bifida and other spinal cord disorders, the flat layer of cells never rolls up into a tube.

The mutated gene in the mouse embryo with the ill-developed spinal cord was identified by Merte as Sec24b, a gene already known to influence the process by which cells package proteins for the cell membrane or for delivery outside of the cell. The Johns Hopkins researchers then brought in Randy Schekman, the Berkeley professor who first discovered the Sec24 gene in yeast.

The team investigated another gene that, when mutated, led to similar problems with spinal cell tube closure in mice. The researchers discovered that the gene, known as Vangl2, was influenced by the presence of Sec24b. Further examination suggested that mutations in Sec24b and Vangl2 could be closely related to the development of spinal cord defects in humans.

Sixty-eight percent of mice engineered with mutations in both Sec24b and Vangl2 were born with spina bifida, which suggested to the scientists an integral interaction between the two genes.

Sec24b was found to be instrumental in spinal cord cells’ ability to properly package Vangl2. Mutations in either of the genes led to similar spinal cord defects in the animal models. The researchers’ discovery has opened the door to further studies in humans, which could lead to great advances in the understanding, prevention, and treatment of patients with spina bifida and other spinal cord disorders.


Johns Hopkins Medical Institutions. (December 28, 2009) “One Step Closer to Closure: Neuroscientists Discover Key to Spinal Cord Defects.” Retrieved December 29, 2009 from the Science Daily website: http://www.sciencedaily.com/releases/2009/12/091228090543.htm