February 2008 Archives
against yourself, or to gossip about others. Use the power of
your word in the direction of truth and love."
~Don Miguel Ruiz
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~Henry David Thoreau
Customized Stem Cells
Reprogramming cells taken from disease sufferers could lead to new treatments.
By Emily Singer
The discovery late last year of a way to generate stem cells from adult skin cells could allow scientists to study disease in unprecedented detail, from earliest inception to final biochemical demise. That's because the stem cells could be used to develop cell lines derived from people with a given disease--neurons from Alzheimer's patients, for example, or blood cells from people with sickle-cell anemia. The resulting trove of cells would capture all the genetic quirks of these complex diseases.
By comparing the development and behavior of cells derived from healthy and diseased people, scientists could determine how disease unfolds at a cellular level, identifying points in the process where intervention might do some good. They could also use the cells to test drugs that might correct biochemical abnormalities. "We want to use these cells to ask and answer questions that can't be asked and answered any other way," says M. William Lensch, a scientist at the Harvard Stem Cell Institute.
Lensch and collaborators in George Daley's lab at Children's Hospital in Boston are attempting to create stem-cell lines using tissue samples collected from people with Huntington's disease, sickle-cell anemia, and another blood disease called Fanconi anemia. Other scientists are expected to follow suit, investigating other diseases.
Credit: Tami Tolpa
1. A biopsy extracts skin cells from an Alzheimer's patient.
2. Scientists use viruses to insert four genes--normally expressed in developing embryos--into the cells.
3. These genes manage to reprogram some of the cells to turn into colonies of embryonic stem cells.
4. Exposure to specific chemicals then coaxes the cells to grown into neurons.
Fight against 'Bubble Boy' syndrome
Monday, January 28th 2008, 4:00 AM
Vicki and Fred Modell want to spare others their pain.
Through the New York couple's efforts, hundreds of thousands of newborn children around the world will be screened for Severe Combined Immune Deficiency (SCID), or "Bubble Boy" syndrome.
SCID has many forms but virtually the same impact: Children born with it have compromised or nonfunctioning immune systems that leave their bodies susceptible to a long list of often fatal infections.
Health officials estimate that 1 in every 100,000 newborns has some form of SCID.
But Dr. Jack Routes, medical director of Allergy and Clinical Immunology at Children's Hospital and Medical College of Wisconsin, said, "We really don't know how prevalent it is. We know it is more prevalent than that, but a lot of these kids die without being diagnosed."
Fred and Vicki Modell lost their son, Jeffrey, to Primary Immunodeficiency (PI) in 1985. He was 15 years old.
Their pain is still evident 23 years later as the parents recall his life; the too frequent emergency room visits and hospital stays, the painful gamma globulin injections to ward off infections and, most difficult, the years of his life spent not knowing what was wrong.
"I remember Jeffrey saying he wished he had leukemia, because then at least he would know what was wrong with him," Vicki said.
After Jeffrey's death the Modells got to work. Fred, who runs a wholesale jewelry business, and Vicki, who has long been active as a fund-raiser in the city, in 1987 founded the Jeffrey Modell Foundation to promote screening and treatment for all forms of SCID.
There are now 36 Jeffrey Modell Centers worldwide, from the United States to Australia, Europe and South America to the Philippines. Last year, the Jeffrey Modell Immunological Center opened at Harvard Medical School.
This month, the Modells - who have a daughter, Lori - returned from Japan, where they not only opened a center in Toyko (most of the centers are formed in conjunction with hospitals, universities and other health organizations) but the Japanese government offered to partner with the foundation to promote physician education and public awareness of PI and to make other changes in how the disease is treated there.
"Even for us, this is really exciting," Fred Modell said. "We had a real signing ceremony and everything. It was very exciting."
On Jan. 1, Wisconsin became the first state to test its newborns for SCID - some 70,000 children are born there annually.
The Wisconsin program came about after Routes met the Modells while the couple was making a presentation to health officials at the Centers for Disease Control and Prevention in Atlanta a year ago. Largely through the Modells' lobbying efforts, Congress funded grants, to be administered by the CDC, to pay for SCID testing programs.
"Fred and I started talking," Routes said. "He said the foundation would offer $250,000 to get the program off the ground if we could match that. Children's Hospital in Wisconsin matched it, and everything went really fast after that.
"The Modell Foundation is the one who jump-started this," Routes said. "[Wisconsin Gov. Jim] Doyle got behind it, But nothing would have happened without the Modells. They are incredible."
The foundation will host its "Spring Ahead" fund-raiser April 24, at Cipriani 42nd St. Jeff Blau of the Related Companies is the honoree.
For more information on the benefit, call (212) 819-0200. To learn more about the Jeffrey Modell Foundation, go to the Web site, www.info4pi.org.
Article here.
"Life's blows cannot break a person whose spirit is warmed at the fire of enthusiasm."
~Norman Vincent Peale
"The secret of getting ahead is getting started. The secret of getting started is breaking your complex overwhelming tasks into small manageable tasks, and then starting on the first one."
at 5:30 PM about the healing power of stem cells hosted by Children's Hospital Boston.
Acupuncture boosts in-vitro pregnancy chances: study
PARIS (AFP) -- Acupuncture can increase the chance of success for couples seeking to have a baby through in-vitro fertilisation (IVF), according to a review published online Friday by the British Medical Journal (BMJ).
The paper looked at seven studies in which 1,366 women undergoing IVF were given acupuncture or a sham form of it -- in which dummy sensations were substituted for pinpricks -- or no additional treatment at all.
Overall, the odds of pregnancy increased by 65 percent among the acupuncture group, although this figure may be overstated as data for the trials was uneven, say the authors.
They note that in trials where there was a generally high success rate, acupuncture conferred only a relatively slender advantage, of 24 percent.
In four of the trials where the outcome of IVF was known, acupuncture boosted the probability of a live birth by 91 percent.
Cautiously describing their findings as "preliminary evidence," the authors say acupuncture "improves rates of pregnancy and live birth" among women undergoing IVF.
Previous research has generally found that acupuncture either has no effect on pregnancy rates or somewhat increases the chance of success.
An exception to this was a study last year that found women who had had acupuncture with IVF were less likely to get pregnant compared with counterparts who had not had the needles treatment.
Acupuncture has been used in China for centuries as a spur to reproduction, and its use is growing amongst couples turning to IVF to have a baby.
Among the theories circulating as to why acupuncture may be effective with IVF is the idea that it stimulates the flow of blood to the uterus, thus making the lining of the womb more receptive to the implantion of the embryo.
But assessing the practical benefits of acupuncture is a challenge, given the so-called placebo effect.
This term is used to describe an improvement that can happen among volunteers who are given a dummy treatment, or a placebo, used to draw a comparison with the real treatment.
Under IVF, a woman is giving hormones to stimulate production of eggs, which are gently harvested with a needle and fertilised in the lab using sperm from her partner.
One or several embryos are then transferred back into her uterus via the cervix.
More via AFP here.
"The world does not need tourists who ride by in a bus clucking their tongues. The world as it is needs those who will love it enough to change it, with what they have, where they are."
~Robert Fulghum
'Councils' have offered 'counsel' for 10 years
The word "council" means "an assembly of persons called together for deliberation or discussion," while "counsel" means "advice or guidance." For the past decade, the Patient and Family Advisory Councils (PFAC) have illustrated both definitions.
Since their founding in 1998, these groups have left their mark throughout Dana-Farber -- from improving patient services to helping design clinics to publishing Side by Side, a newsletter written by and for patients and families.
Back then, Dana-Farber's inpatient beds had just moved to neighboring Brigham and Women's Hospital as these two institutions began a now-robust partnership to provide cancer care for adult patients. In addition, Dana-Farber was still feeling the echo of two devastating medical errors that occurred in 1994.
Patient and families were concerned on both fronts, and said so. Their courage in speaking out, and Dana-Farber's willingness to listen, led to the formation of two groups we know today as "P-Fack" (PFAC) -- one founded in 1998 and devoted to adult care, and another launched in 1999, focused on pediatrics.
Their accomplishments over the last 10 years were celebrated at a recognition dinner on Jan. 8.
Today, the Dana-Farber/Brigham and Women's Cancer Center (DF/BWCC) offers integrated care for adult patients, and the councils are an international model for patient- and family-centered care, drawing site visits from hospital representatives worldwide, most recently as far-flung as Iceland. Similarly, hospital leaders and council members are frequently invited to speak at various health care organizations about how to create similar structures.
"It has been an incredible experience to plant a seed and watch it grow, see a vision become a reality, and bring about change in such a positive way," said Martie Carney, a founding adult council member. Marlene Nusbaum, who transitioned to emeritus status this year, said, "This work has allowed me to give back some of the goodness Dana-Farber gave me."
A legacy of improvements
It's hard to imagine Dana-Farber without the Eleanor and Maxwell Blum Patient and Family Resource Center or the Leonard P. Zakim Center for Integrative Therapies, but their existence is owed, in part, to advocacy from council members. In addition, pediatric patients can receive intravenous hydration at home, and adult patients entering the DF/BWCC emergency room are "fast tracked" to an oncology bed, thanks to the council's input. Recently, their perspectives were key in the creation of satellite clinics at Faulkner Hospital in nearby Jamaica Plain, and at Milford Regional Medical Center 35 miles southwest of Boston. They are also involved in planning the Yawkey Center for Cancer Care, now under construction, that is adjacent to the main building.
With their ID badges and familiar faces, these volunteers were "embedded" in the workings of the organization long before the word became widely used. In fact, many staffers are so accustomed to patients and their family members showing up at meetings that they don't realize how unusual it is. Advice from these key groups -- each one comprises approximately 18 patients and their family members, along with several staff members is sought on nearly every important matter concerning patient care. Their opinions in real time offer a glimpse of patient care that goes beyond written surveys.
"Patient and family involvement is an expectation, not an exception," says Patricia Reid Ponte, RN, DNSc, FAAN, senior vice president for Patient Care Services and chief nurse. Council perspectives stay fresh because each member serves for three years, after which many stay on as nonvoting, emeritus members, retaining their role as advisors. For the first time this year, 70 percent of the active council members are new. "We can't remain the same from year to year," says former adult council co-chair Jim Stam. "We have to grow and change."
Still, the original mission endures. Christine Reilly, who joins Eric Rodriguez at the helm of the pediatric council, says "We help clinicians understand what it's like to be a patient."
What would motivate someone who is undergoing cancer treatment, or has finished, to return to Dana-Farber for unpaid committee work and meetings at night? Why would the parent of a young child with cancer, whose work/family balance is already out of kilter, add council work to a hectic life? Michael Dodd, PhD, outgoing co-chair for the Pediatric Patient and Family Advisory Council, answers this with another question: "How do you walk away from a place that saved your child's life?"
Giving back, making a difference, and easing the next family's cancer journey are reasons often cited by "PFACers" for their dedication. In addition, in a place that emphasizes cure and survival, the councils have recently embraced the participation of families with a different outcome: loss. Christine Reilly, who lost her 5-year-old son to cancer, said at the councils' 10th anniversary dinner Jan. 8, "Mikey was a survivor in his way. Because he received such excellent care, we had more time with him than we expected. We see our lives not in terms of what we lost but what we were given."
Wrong-site/Wrong-patient errors
In a recent incident at DFCI, one staff member prepared the room for a bone marrow biopsy and a second staff member accepted and labeled the specimen. Because the entire care team had not taken a time out for final verification, the second staff member accidentally mislabeled the specimen with the wrong patient's information. Although the error was discovered at the lab and corrected, this illustrates the "wrong-patient" risk associated with bedside procedures.
In a related report, a series of wrong-site surgical errors at Rhode Island Hospital have received wide media coverage. In three wrong-site brain surgery events during 2007, surgical staff failed to follow the Universal Protocol. After the third event, the hospital was fined $50,000 and ordered to institute a set of corrective measures. Click here to read a news article describing the events and resulting actions.
