Going along hand in hand

Twenty-three years ago, Lisa Szilagyi gave birth to her first child, Emily, who was diagnosed with tuberous sclerosis, a genetic disease that causes tumors to grow on vital organs. It resulted in severe epilepsy and essentially made Emily nonverbal.

And yet none of this seems to matter when Emily is at Hand in Hand, a program for children and young adults with special needs at Malibu Jewish Center & Synagogue. She loves cooking with her peers, eating meals with them and listening to music. 

“She enjoys being around people even though she can’t verbally communicate,” her mother said. “She loves the noise and activity.”

Founded in 2010, Hand in Hand has activities every Thursday afternoon during the school year, when about 14 child and teen participants show up, along with upward of 30 teenage and adult volunteers.

Hand in Hand — which focuses on hands-on activities, music therapy and community service — was started by Szilagyi, Janet Hirsch-Ettenger and the synagogue’s Cantor Marcelo Gindlin. Each brought a different background to the program.

Szilagyi came as a mother and a professional in the field. Formerly employed in film distribution, she quit her job to see to her daughter’s medical needs. That led her to become a special-education teacher at Malibu High School, where she realized how social interaction for children with special needs was lacking.

“These opportunities are so rare for them,” she said. “They spend a lot of time with adults and in therapy, and they don’t get a lot of social time with peers without disabilities. We’re doing activities that all the kids like.”

Hand in Hand participants cook and  eat together, as well as create arts and crafts and sing with the cantor. They go on field trips to parks and ranches in Malibu, and once a month they volunteer at Jewish Family Service’s SOVA Community Food and Resource Program or at Shane’s Inspiration, accessible playgrounds for handicapped children throughout the area. 

“We feel it’s really important that [the kids] aren’t always the recipients of other people’s generosity and kindness, but that they find ways to give back to their community, too,” Szilagyi said.

Gindlin, who is trained as a music therapist, conceived the program, having run similar ones in Argentina, his native country. He reached out to Szilagyi because of her background and to Hirsch-Ettenger because she helped organize tikkun olam projects for teens at the shul. 

“It helps the kids socialize and make friends, and builds confidence and their self-esteem,” Gindlin said. 

Although the program, which Gindlin said has received support from The Jewish Federation of Greater Los Angeles and Windsong Trust, is held at the Malibu Jewish Center, it is nondenominational. For the two-thirds of participants who are Jewish, holiday activities are held. For  the past three years, for example, they’ve put together a latke community party during Chanukah and sold homemade bath salts at the Purim carnival. 

Linda Ellrod of Malibu, vice president of the Malibu Special Education Foundation, whose daughter Kristina, 19, goes to Hand in Hand, said that the program has helped her daughter’s speech and motor skills. But that’s only part of the benefit. 

“I think it’s been good for my daughter because it is a way that she can socialize with her peers. It’s also good for the peers to socialize with people with disabilities,” she said.

Ellrod said that it’s given her the chance to make friends with other parents, too. 

“It’s been really nice for me to socialize with them,” she said. 

Hirsch-Ettenger, a Malibu doula who also works as a childbirth educator, said Hand in Hand has the power to improve the lives of the peer volunteers as well. 

One of those teens, 14-year-old Cubbie Kile, said volunteering with Hand in Hand has been fun and thoroughly enriching. 

“I feel that it has opened my eyes more to what is outside my bubble,” she said. “These kids are just like us.”

The connections that occur between volunteers and participants are priceless, Szilagyi said. 

“The fact that my daughter and my students with development disabilities get the chance to hang out with their buddies and do fun activities is such a revelation for them,” she said. “You have to really see it to experience how much fun the kids have.”

Jailed Alan Gross may have tumor, doctor says

Jailed Jewish-American contractor Alan Gross may have a cancerous tumor that needs to be treated, his lawyer said.

Gross has an unidentified mass behind his right shoulder, according to reports. Cuban doctors declared the mass to be a hematoma that would reabsorb over time.

CT and ultrasound scans of the mass conducted by the Cuban doctors were sent to Gross' lawyers in the United States.

“Gross has a potentially life-threatening medical problem that has not been adequately evaluated to modern medical standards,” U.S. radiologist Dr. Alan Cohen said in a statement released by Gross' attorney Jared Genser.

Cohen said in his statement that Gross should be treated at a U.S. hospital and that the mass should be biopsied. A “soft tissue mass in an adult who has lost considerable weight must be assumed to represent a malignant tumor unless proven to be benign,” the doctor said, according to Reuters.

Gross, 63, of Potomac, Md., was sentenced last year to 15 years in prison for “crimes against the state.” He was arrested in 2009 for allegedly bringing satellite phones and computer equipment to members of Cuba’s Jewish community while working as a contractor for the U.S. Agency on International Development.

Last month, a Cuban Foreign Ministry official rejected claims by Gross’ wife, Judy, that Gross was in ill health, and also said Cuba was willing to negotiate his release with U.S. officials, reportedly in exchange for five Cuban spies, four of whom remain in jail in the U.S.

Gross reportedly has lost more than 100 pounds since his arrest and his family says he is suffering from degenerative arthritis. His mother is dying and one of his daughters has cancer.

EU’s Ashton condemns ‘hateful’ Iran remarks on Israel

The EU foreign policy chief said on Saturday that comments by Iranian President Mahmoud Ahmadinejad, who called Israel a “cancerous tumor” with no place in a future Middle East, were “outrageous and hateful”.

Catherine Ashton’s language was unusually forthright for the West’s chief negotiator over Iran’s nuclear program.

Ashton “strongly condemns the outrageous and hateful remarks threatening Israel’s existence by the Supreme Leader and the President of the Islamic Republic of Iran,” said a statement by her spokesman.

“Israel’s right to exist must not be called into question.”

On Friday, Ahmadinejad told demonstrators in state-organized protests that “in the new Middle East … there will be no trace of the American presence and the Zionists”. As thousands of Iranians shouted “Death to America, death to Israel”, Ahmadinejad called Israel a “cancerous tumor” for its occupation of Palestinian land.

Earlier this week Iranian media reported that Iran’s Supreme Leader Ayatollah Ali Khamenei had said Israel would one day be returned to the Palestinian nation and would cease to exist.

Ashton is acting as chief negotiator for six powers – the United States, Russia, China, France, Germany and Britain – that are trying to persuade Iran to scale back its nuclear program through economic sanctions and diplomacy. They fear Iran’s nuclear program aims at producing weapons, though Tehran says it serves peaceful purposes only.

Ashton and Iran’s chief negotiator agreed at the start of August to hold more talks about Iran’s nuclear work, but there has been no sign of imminent progress in the decade-long dispute.

Ashton “calls upon Iran to play a constructive role in the region and expects its leaders to contribute to de-escalate tension and not to fuel it”, Saturday’s statement said.

On Friday, U.N. Secretary-General Ban Ki-moon said the verbal attacks on Israel were “offensive and inflammatory.

Reporting By Sebastian Moffett; Editing by Alessandra Rizzo

Can MRI save lives?

In 2003, Leslie Berlin was training six days a week, two hours a day as a figure skater. Two years earlier, while taking lessons with her twin sister, she fell in love with the sport. At 37, she started entering competitions at an age when most professionals hang up their skates.

“It’s something I wanted to do at the amateur level,” said Berlin, a San Dimas resident who competes in her own age group. “I feel like when I’m skating I can do anything. It makes anything else seem easy.”
But Berlin’s life became anything but easy beginning in April of that year.
Her mother, Eleanor Tavris, who had survived a battle with stage-three breast cancer nine years earlier, was vigilant about monitoring the health of her three daughters. When a cancer seminar caught her attention, she invited Berlin to come along.

Tower Saint Johns Imaging:

S. Mark Taper Foundation Imaging Center:

City of Hope Department of Clinical Cancer Genetics:

Tower Hematology Oncology Medical Group:

Israel Cancer Research Fund Los Angeles

After listening to a presentation from a breast radiologist, Berlin began to worry that her annual mammogram and monthly self-exams might not be adequate enough to detect a tumor.
“I was concerned about my family history and that a percentage of malignancies are missed in mammograms,” she said.
She underwent genetic screening and was relieved when her test for a cancer-causing genetic abnormality common among Ashkenazi women came back negative. But Berlin still wasn’t convinced she was in the clear. She had been told she had dense breasts, which can obscure the detection of tumors in mammography and ultrasound screenings, and she wanted to be certain she was cancer-free.

Despite her family history of cancer, Berlin’s insurance company initially fought her request for magnetic resonance imaging (MRI) of her breasts. MRI scans are expensive, ranging from $1,000 to $6,000.
After she challenged the carrier’s decision and won approval for the procedure, Berlin scheduled her test in early April at Cedars-Sinai.
And, indeed, the MRI revealed an aggressive tumor growing inside of Berlin’s right breast.
For young, high-risk women like Leslie Berlin, vigilant cancer screening can sometimes mean the difference between a lumpectomy and the loss of one or both breasts to mastectomy. But research is revealing that mammogram screenings by themselves are not a guarantee of catching breast cancer.

No method of detection is 100 percent effective. Mammograms are thought to be about 80 percent effective in women 65 and older, but the reliability drops to 54 percent in women under 40, according to the American Cancer Society’s Guidelines for Breast Cancer Screening. Factor in dense breast tissue, which in itself is associated with a higher cancer risk, and the reliability of a mammogram drops further.

Breast cancer remains the second leading cause of death from cancer among American women, with lung cancer topping the list.
This year 213,000 women will be diagnosed with breast cancer in the United States, according to the National Cancer Institute (NCI), and 25 percent of women will be diagnosed with the disease in their lifetime. The NCI puts the breast cancer risk at 60 percent to 80 percent for women of Ashkenazi heritage with a family history of breast or ovarian cancer who also test positive for either the BRCA 1 or BRCA 2 gene mutations.

In addition, researchers believe there’s a strong likelihood of as-yet-undiscovered genetic risk factors in the Ashkenazi population that could play a role in breast and ovarian cancer.

Experts recommend that women in such high-risk categories begin mammograms at age 30 or younger and at shorter intervals (e.g., every six months) in order to catch breast cancer in its earliest stages. And MRI is increasingly being recommended as a complimentary screening tool, especially to find invasive tumors, said Dr. Arnold Vinstein of Tower Saint John’s Imaging in Santa Monica.
Whereas film and digital mammography uses X-rays to detect changes in the breast and signs abnormalities, MRI finds abnormal tissue by using magnetic fields to measure the reaction of hydrogen atoms in the body.
Recent studies have backed up the reliability of MRI, which has been shown to catch developing tumors that can be missed in traditional mammography. Its accuracy is generally considered to be 90 percent.

With more doctors recommending MRI scans, the S. Mark Taper Foundation Imaging Center at Cedars-Sinai has seen patient numbers jump from a couple every month to five per day over the last five years, said Dr. Rola Saouaf, chief of the center’s body and cardiovascular section.
Despite the substantially higher cost of MRI, women like Berlin say the peace of mind is worth the expense.

Without the scan, Berlin believes, “they never would have detected it. I had mammograms every year and it never showed up. My oncologist told me if I didn’t have it treated, I’d have had four years to live.”

Medical professionals began turning to MRI for breast cancer 10 years ago, and its use has blossomed in the last five years. In July 2004, a landmark study in the New England Journal of Medicine confirmed that MRI is more sensitive than mammography when it comes to detecting tumors in women with an inherited susceptibility to breast cancer.
Cedars-Sinai’s Saouaf said she was skeptical of the technology when she started at the hospital five years ago.
“I thought there would be too many false positives,” she said, “but I’ve picked up a lot of tumors.”
Saouaf said one of the drawbacks at first was that MRI couldn’t always distinguish between cancer and a benign condition, like fibrocystic breast disease. Now a staunch supporter, she said the technology is improving and the scans are increasingly able to determine such differences.
During the procedure, women lie chest down on a movable bed with their breasts inside two coil-lined cylinders, which emit the radiofrequencies. The bed slides into a tube at the center of a 7-by-7-foot cube, and as the machine prepares to scan it emits a noise many patients have described as a rapid hammering or thumping. Labs will often provide patients with personal stereos to help cut down on the noise, as well as sedatives for those who experience anxiety or claustrophobia.