A Sukkah of Joy

Ruth and Sy Hefter’s sukkah, which now resides in Baltimore with their daughter-in-law Wendy and her family, tells a story of resilience. Photos by Amy Hefter

Ruth and Sy Hefter’s sukkah, which now resides in Baltimore with their daughter-in-law Wendy and her family, tells a story of resilience. Photos by Amy Hefter

Forty years ago, Ruth and Sy Hefter built a one-of-a-kind sukkah. Four decades later, their temporary holiday hut has lived in three states, survived two major hurricanes and now resides in Baltimore.

“My sukkah is inspired from a sukkah at the Jewish Museum in Jerusalem,” said Sy Hefter. “In that sukkah, all the walls were made out of wood, whereas my sukkah is made out of panels and canvases. If you look at it, you will see a mural.”

Still working as a social worker, Sy, 87, brought designs from Israeli artists to life in decorating his sukkah, which was recently raised at the Pikesville home of his daughter-in-law, Wendy Hefter, in time for the holiday of Sukkot that begins on the night of Oct. 15.

“I saw a postage stamp by a famous Israeli artist and decided to enlarge it,” said Sy. “You have honestly never seen a sukkah like this. It is so unique and brings joy to so many people.”

101014_sukkah2Living in Wilkes-Barre, Pa., at the time, the Hefter family entertained friends and family in the sukkah every year. In June 1972, Hurricane Agnes hit their hometown. While the flood filled their apartment, their sukkah, which had been disassembled, survived the storm.

“I used waterproof paint to create the panels,” said Sy. “All I had to do was hang the sukkah up to dry, and it was perfect again.”

Moving to Brooklyn, N.Y., and then the Belle Harbor section of Queens, their sukkah was put on display for everyone to see.

It was “well known as the first stop on their shul’s annual Sukkah Hop,” says Wendy Hefter in a written history of the sukkah. “Everyone marveled at the beauty within the sukkah while Ruth and Sy retold the background of each design to their guests — young and old — and then offered them some home-baked goodies and a lollipop.”

If one flood was not enough, the resilient sukkah took on another hurricane. Almost 40 years after Hurricane Agnes, Hurricane Sandy ripped the East Coast in November 2012.

“First, it was Agnes, and then, it was Sandy,” said Sy. “Mother Nature is no match for our sukkah.”

According to the family, the Hefters remained in their home despite warnings to leave. Staying on the second floor in their landlord’s house, the Hefters watched the first floor of their home flood. Living in the “disaster area” of Sandy’s footprint, they lost nearly all of their belongings, including their car and a prized bicycle.

Driving up to salvage any leftover belongings, their son, David, went to the apartment to see what possessions were left. After processing the shock of the flood, the Hefters, writes Wendy, recovered “valuable papers, artwork from the walls, two 1950s Eames molded fiberglass chairs that had survived Agnes, and … the sukkah panels!”

Moving the sukkah to its third and final home, David and Wendy Hefter and their daughter, Amy, adopted the hut.

“As the sun shone onto [the panels], I was in awe of their beauty and brilliance, even with their new ‘Sandy’ stains,” writes Wendy. “I had only seen them in photographs since we always spent Sukkot in our own sukkah.”

Ruth and Sy now look forward to coming to Baltimore to celebrate.

Sy said, “I love creative people, and I invite everyone to come see the sukkah, eat in the sukkah and give me ideas on how to I make the sukkah better.”

afreedman@jewishtimes.com

JCC Goes Orange

The Owings Mills JCC’s Early Childhood Education Center threw its support behind the Orioles on Wednesday, Oct. 1.

The school’s approximately 270 students, some dressed in Orioles garb and sporting face paint, gathered in the JCC’s lobby to cheer, dance and rally for their hometown team, as it entered the playoffs.

Ilene Meister, director of the ECE, said it held the rally “to create memories for these children.” She said her oldest child was a little boy the last time the Orioles went to the World Series in 1983, and he still talks about it with excitement.

“It makes children realize they’re part of something bigger,” Meister said.

Classes came up with cheers and participated in art projects that included headbands, signs and more.
Photos by Marc Shapiro

Still Going Strong at 90

Students who receive financial aid from CSB come from every walk of life. Pictured are many of the most recent recipients at this year’s awards ceremony. (Provided)

Students who receive financial aid from CSB come from every walk of life. Pictured are many of the most recent recipients at this year’s awards ceremony. (Provided)

As it turns 90 next month, the Owings Mills-based Central Scholarship Bureau is celebrating the more than 7,000 underprivileged students statewide who have pursued higher education because of its largesse.

Originally founded as a solely Jewish organization, today CSB distributes more than $1 million of financial aid annually, offering interest-free loans and scholarships of up to $40,000 per person, according to the organization’s president, Jan Wagner.

“We are investing in the future,” she said. “For the students who receive financial aid, we are giving them the flexibility and opportunities to accomplish their goals.”

Helping students from every walk of life, the CSB has provided scholarship money to artists, doctors, musicians, lawyers and actors, among others. As a second-generation Central Scholarship recipient, Baltimorean Samuel Witten used his interest-free loans to pay for his undergraduate degree at the University of Maryland in 1975. He went on to work for the U.S. Department of State for 22 years, where he served as the acting assistant secretary of state and deputy legal adviser.

“Central Scholarship helped pay for my father to go to Hopkins for his undergrad and master’s degrees from 1934 to 1940,” said Witten, who practices international law at Arnold & Porter LLP in Washington, D.C. “It means a lot to me that the same company that paid for my father to go to college funded me as well.”

Paying off his loans after graduating from Columbia Law School, Witten believes CSB “put him on the right foot to launch his career in international law.”

Granting statewide recognition to the CSB, state Del. Dana Stein (D-District 11) recently sent the organization an official proclamation honoring its 90 years of service on behalf of his district’s delegation in Annapolis.

“Providing money for higher education is so critical,” said Stein. “Central Scholarship is in my district, and I have gotten to know them on a personal level. As the co-chair of the Financial Education and Capability Commission, I believe that providing scholarships and funding for financial aid has never been more important.”

Central Scholarship began in 1924 after the Hebrew Orphan Asylum shut down and left its remaining assets to fund vocational training for orphaned Jewish boys. At the time, each student was offered up to $300 of financial aid. Quickly expanding to include funds for academic education, six organizations — the Associated Jewish Charities’ Hebrew Benevolent Society, the Big Brother League, Daughters in Israel, the Jewish Children’s Bureau, the Jewish Children’s Society and the Young Ladies Benevolent Society — came together to create one centralized scholarship program from several individual programs.

“That’s how we got our name,” said program director Roberta Goldman. “After that meeting between the six organizations at the AJC on Lombard Street, the Central Scholarship Bureau was born.”

In the 1940s, Central Scholarship grew to provide funding for all Baltimore students regardless of religious affiliation. North Oaks resident Margie Warres, 96, devoted 36 years to the CSB and served as the organization’s first executive director in 1952. After retirement, she wrote a comprehensive history of the organization. Now, the bureau’s records and documents reside at the Jewish Museum of Maryland.

“It had been a very precious and rewarding experience for me in over 36 years at the helm of this first agency of its kind,” Warres recounts in her written history of Central Scholarship. “CSB’s special quality has been ëheart,’ backed by sound judgment, fairness and integrity in its decisions by board and staff — and in its constant retesting of policies and ideas over the years.”

The CSB has had thousands of donors, including prominent Baltimoreans such as Moses Rothschild, Jacob Blaustein, Aaron Straus and Eleanor Levy.

Father of six and Talmudical Academy of Baltimore’s director of development Rabbi Yaakov Lefkovitz enjoyed seeing many of the donors and staff at the bureau’s annual donor event at the Cylburn Arboretum. Thanks to financial aid from the CSB, two of his children, Aron and Sivia, were able to study in Israel.

“The thing that really strikes me is how personal they are,” said Lefkovitz. “Every year, they hold an event for students to meet the donors. Since Aron is still in Israel, I went to represent the family. All of the Central Scholarship staff members not only remembered my name, but they asked me about Aron. It is not just a bank or a pot of money. These people truly care about each and every student they help.”

To celebrate its upcoming 90th anniversary, the CSB will host a communitywide event on Sunday, Nov. 8 at the Brown Center Institute of College of Art. Titled “Central Scholarship’s Got Talent,” the evening will feature four performances by scholarship students in the arts and honor the Morris and Pearl Silberman family for its recent large donation to the organization.

Viola player Jennifer Volmer will showcase her talents at the celebration through both classical and contemporary music. Volmer feared she would have to drop out of music school after her first year for financial reasons. Once the CSB stepped in, she was able to finish school and eventually pursue a master’s degree.

“Since my father passed away, we could not afford the Eastman School of Music,” said Volmer. “I got a full scholarship for my first year, but I did not think I could finish until Central Scholarship Bureau came to my rescue. They helped me pay for my last three years and helped my sister pay for schooling too.”

In order to meet the requirements, students need to have a 2.0 minimum G.P.A. and come from households earning below $90,000 to be eligible for academic scholarships and below $66,000 to receive scholarships for career and technology training. With more than 5,000 applicants in 2011, the CSB turned down 333 students with 4.0 grade averages. Generally funding less than 10 percent of all applicants, the CSB launched a $10 million Campaign for Students this year and has already reached its target.

“We wish we could help everyone who applies,” said development director Kathleen Elliott. “Many of our donors have been involved with Central Scholarship for multiple generations.”

From providing scholarships to African-American students before the Civil Rights Act to sending boys to yeshiva in Israel, the CSB hopes to build on its rich history for years to come.

“We have already done 90 years,” said Wagner. “Let’s do 90 more.”

To learn more about Central Scholarship’s history, view the Central Scholarship timeline.

afreedman@jewishtimes.com

A Life Wonderfully Lived

Ida Goldberg

Ida Goldberg (Photos provided)

Known for her many sayings, Ida Goldberg, who passed away Saturday, Sept. 27 at the age of 104, lived by the motto, “Old age is not for sissies.”

Born in Sosnowiec, Poland on Dec. 12, 1909 to Aaron and Sophia Noonberg, her family left Eastern Europe for America when Ida was only 3 years old. Leaving most of their possessions behind, Ida left her small town on the Polish-German border after authorities threatened to arrest her father. Ida’s family pretended they were going out shopping but instead boarded a boat to Baltimore.

Living in Baltimore for the rest of her life, Ida prided herself on promoting Judaism. Sacrificing her own schooling after the eighth grade to look after her mother, Ida always endorsed Jewish education.

“Our mother loved the fact she was born on the third night of Chanukah,” said son and author M. Hirsh Goldberg. “In addition, her son, my brother Victor, was born on Shabbat, and I was born on Yom Kippur. She even died Shabbat Shuva, the Shabbat between Rosh Hashanah and Yom Kippur.”

Ida was involved in the Talmudical Academy’s Ladies Auxiliary for many years, serving first as vice president and then as president. In addition, Ida was also involved in helping Bais Yaakov and Ner Israel grow. Since her father was president of Tifereth Israel, supporting Jewish causes was in her blood.

Ida Goldberg (center) sits with her granddaughter, grandson-in-law and two of her great-grandchildren. (Provided)

Ida Goldberg (center) sits with her granddaughter, grandson-in-law and two of her great-grandchildren. (Provided)

“Our dear mother chaired many luncheons and was always a huge supporter and fundraiser at TA, Bais Yaakov and Ner Israel Rabbinical College,” said Victor Goldberg. “Between my mother and my father, the two of them spent 80-plus years helping Jewish education in Baltimore grow. She helped make TA the institution it is today.”

Ida met her husband, attorney Herman Goldberg, at a party. Married from 1933 until Herman’s death in 1986, Ida inspired her husband to play an active role in the Jewish community.

“People have fond memories of my parents walking home from synagogue on Shabbat holding hands,” said M. Hirsh Goldberg. “They were married for 53 years and so in love. Due partially to my mother’s influence, my father quit his six-days-a-week job in favor of observing Shabbat.”

Truly a lawyer’s wife, Ida helped her husband study when he was at Georgetown’s law school in Washington, D.C. Revising the material, he would reteach her everything he learned in class. Her sons joke that she may not have graduated from high school, but she was extremely well-versed in law.

100314_goldberg_obit3After Herman’s passing, Ida lived by herself for many years, then for five years with Hirsh and his wife, Gail. Eventually moving to Levindale Hebrew Geriatric Center and Hospital for her final years, she lived every day to the fullest.

“My mother’s treatment at Levindale was wonderful,” said Victor Goldberg.

“One of the highlights for her was when the boys from Ner Israel came to Levindale to dance around her and the other residents on Fridays. That made everything come full circle.”

The sixth of seven siblings, Ida lived the longest. As the sister of the late Joseph, Charles, Morris and Herman Noonberg, Freda Blaker and Kate Savitz, she was one of two siblings to live beyond 100. Her mother passed away at the age of 102.

Ida’s funeral was held at Sol Levinson and Bros. on Sept. 28. She had two sons, Victor and M. Hirsh, nine grandchildren, 24 great-grandchildren and two great-great-grandchildren.

“All three generations of her descendants observe Orthodox Judaism. That truly shows how much of an influence and inspiration she was. She will be missed,” said Hirsh Goldberg.

afreedman@jewishtimes.com

Presbyterian Minister Addresses BHC

Baltimore Hebrew Congregation hosted the Rev. Andrew Foster Connors at its Friday, Sept. 19 service as part of the congregation’s one-week pulpit exchange with Brown
Memorial Park Avenue Presbyterian Church.

“Tonight, I recognize that that peace has been jeopardized by the actions of the Presbyterian Church’s General Assembly in actions it took over the summer,” Connors told BHC congregants.

He went on to discuss the historical relationship between the two congregations, the June vote by the Presbyterian Church (USA) and the most recent Israeli-Palestinian conflict.

The Presbyterian Church, he told congregants, has long seen itself as an advocate for peace. As such, many in the church viewed the move to divest from three American companies doing business with Israeli settlements as a means of forcing the Israeli government to halt its expansion into Palestinian territories. While he stressed that he did not agree with the ultimate decision to divest from the three companies — though the actual investment was negligible — Connors said that he did agree with the many people who believe that the expansion of settlements is a hindrance to peace in the region.

“The resurgence of anti-Jewish attitudes inside my beloved Presbyterian Church (USA) only reinforces my belief that the divestment strategy violates the church’s important, historic role in peacemaking in the region, as a broker for peace, rather than a cheerleader for one side,” said Connors.

Connors said the progress he has seen interfaith projects make in Baltimore City neighborhoods gives him hope for future peace in Israel and Palestine.

BHC Rabbi Andrew Busch addressed  Brown Memorial on Sunday, Sept. 14.

hnorris@jewishtimes.com

No Rainout for Rosh Hashanah Under the Stars

Close to 4,000 people attended Rosh Hashanah Under The Stars at Oregon Ridge Park on Sept. 24. (Marc Shapiro)

Close to 4,000 people attended Rosh Hashanah Under The Stars at Oregon Ridge Park on Sept. 24. (Marc Shapiro)

Although it was a chilly night with the looming threat of rain, Rosh Hashanah Under the Stars went off without a hitch last week.

According to organizers of Baltimore Hebrew Congregation’s eighth annual event, thousands descended on Oregon Ridge Park Sept. 24 for an evening service featuring the synagogue’s rabbis and cantors, a choir and a sign-language interpreter.

“Families who aren’t affiliated, connected to the JCC, The Associated or a congregation, this is their ritual,” said Andy Wayne, director of communications and engagement at the Reform synagogue. “It’s important to us that everyone be able to be a part of the High Holy Days whether they’re a member of a synagogue or not.”

Based on registration numbers and polls taken at the door, he estimated that close to 4,000 people attended. While it featured songs, prayers and passages typical of a Rosh Hashanah service, the service also included a performance of Matisyahu’s “One Day,” which allowed two choir members to sing solo.

Rabbi Elissa Sachs-Kohen focused her sermon on people’s relationship with technology. Although the service was projected on a screen and people could follow along on tablets or smartphones, Sachs-Kohen advocated for a healthy coexistence with the technology many people rely on so heavily these days.

“We need the solitude of not being constantly entertained,” she said. “Our humanity requires it.”

mshapiro@jewishtimes.com

Men May Have Been Targeted for Religion

At least one man believes he and two others were targeted because of their religion in an incident that took place on Old Pimlico Road around 5:30 p.m. on Thursday, Sept. 25, the first day of Rosh Hashanah.

Three males were walking in the 6800 block of Old Pimlico Road when a car pulled up to them, rolled the window down, and the man driving pointed something at them. Victims told police they heard a popping noise and thought the man in the car was shooting at them. There we no injuries reported.

The initial police statement said the man pulled up, yelled “Jews, Jews, Jews” and fired a BB or air gun at the men. After re-interviewing the three male victims, police reported that the driver did not say anything to them. Police said a hole in a window at Bais Hamedrash and Mesivta of Baltimore that officers found after the incident was found to be old damage, according to an update from police.

The incident remains classified as a bias incident, the update said.

“We’re still looking to find out who’s behind it,” said police spokesman Cpl. John Wachter.

He said that police have someone at headquarters who keeps track of bias incidents and sends them to state police for filing. Wachter is not aware of any other recent bias incidents, he said.

“Anytime there’s an incident like this, we always adjust our operations accordingly,” he said.

Nathan Willner, a spokesman for Shomrim, said that on Rosh Hashanah, the organization made sure each shul had at least one member with a two-way radio so that communication could move quickly if an incident occurred that required immediate action. He anticipates a similar arrangement for Yom Kippur.

Baltimore County Police ask anyone with information regarding this incident to call 410-307-2020.

mshapiro@jewishtimes.com

Shift in Power

100314_senateWith the Republican Party pushing to retake control of the Senate in the upcoming November elections, a partisan shift in power may significantly affect a broad range of foreign policy and domestic social issues that are prioritized by American Jews.

Midterm elections in the Senate and House of Representatives historically have been difficult for the party holding the presidency. Democrats have held the Senate since public disapproval with the administration of President George W. Bush led to a Democratic sweep of both houses in 2006. Similar backlash against President Barack Obama’s Affordable Care Act in 2010 led to a GOP takeover of the House.

The past six years of the split Congress have seen increased partisanship, a government shutdown and an ever-drying supply of major legislation passing the legislature. With the status quo, the obstructionism Obama faces from Capitol Hill is unlikely to improve in his last two years as president.

Currently, the Senate includes 55 Democrats and 45 Republicans, and the GOP will need to pick up at least six seats to obtain a majority.

In Montana, Sen. John Walsh, a brigadier general in the Montana National Guard, was nominated by the state’s Democratic governor to fill the seat vacated by Sen. Max Baucus, who was tapped by Obama to serve as U.S. ambassador to China. But Walsh’s term was short-lived, as allegations came to light that he had plagiarized a large part of a research paper that was required for his advancement to general officer ranks. Walsh admitted to the plagiarism and ended his campaign, creating an open seat.

Montana’s at-large congressman (the state’s population only entitles it to one member in the House), Republican Rep. Steve Daines, is running for the Senate seat and is seen as an almost guaranteed winner in a state that Mitt Romney won by 13 percentage points in the 2012 presidential election. He faces Democrat Amanda Curtis on Nov. 4.

In West Virginia, 77-year-old Democratic Sen. Jay Rockefeller announced in January 2013 that he would not seek re-election. In the race for his open seat, Republican Rep. Shelley Moore Capito leads her opponent, Democrat Natalie Tennant, 53 percent to 34 percent in the latest Real Clear Politics projection. In 2012, Romney won the state, 62 percent to 36 percent.

One of the most likely Republican pickups is in South Dakota. Last year, Democratic Sen. Tim Johnson announced his retirement. The state’s current governor, Republican Mike Rounds, easily defeated his primary opponents and has a wide lead over his Democratic opponent, businessman Rick Weiland.

Another important gain for Republicans would be the hotly contested Senate seat in Louisiana, where embattled incumbent Sen. Mary Landrieu is facing two GOP challengers. Des-pite having his vote split by another Republican candidate in Louisiana’s unusual open election, Rep. Bill Cassidy (R-District 6) leads Landrieu in most polls.

All told, there are six Senate seats currently held by Democrats that are either open seats or occupied by a weak incumbent. These include contests in Alaska, Arkansas, Colorado, Iowa, New Hampshire and North Carolina. Polling in these states is too close to call, though most polls slightly lean Republican.

Although Jewish voters are unlikely to make a major difference in any of the contested races, a shift to Republican control in the Senate is sure to impact Jewish policy priorities. The Republican Jewish Coalition and the National Jewish Democratic Council are thus both helping their parties get out the vote.

“I think there’s no question that support for Israel will, I think, increase dramatically with the Republican leadership in the Senate,” said Matthew Brooks, executive director of the RJC and the Jewish Policy Center think tank. “[This is] mostly because so much of what [Senate] Majority Leader Harry Reid has been doing is bottling up critical legislation, including pressuring members of his own party to not support bipartisan legislation for enhanced sanctions on Iran.

“I think it will be very clear that a top priority of the Republicans, if we get the Senate, would be to follow the lead of the House, which has already passed enhanced sanctions, and give the opportunity for Sen. [Mark] Kirk (R-Ill.) and [Senate Foreign Relations Committee Chairman Robert] Menendez (D-N.J.) to get their critical legislation through the Senate and to the president,” Brooks added.

Brooks also pointed to the August battle in the Senate to pass emergency funding for Israel to replenish the Iron Dome missile defense system’s supply of interceptor rockets. Though the funding passed unanimously minutes before the Senate “adjourned for its August recess, Democrats included the Iron Dome assistance in a broader emergency appropriations bill that included funds for fighting fires in Oregon as well as funding requested by Obama to handle the influx of illegal immigrants from Central America. At the time, Republicans called for a separate bill for Iron Dome funding.

“Those kind of shenanigans, at a time when Israel was in the middle of a critical battle in which they needed to have strong support from America, [prove that] Majority Leader Reid would rather have played domestic politics than help Israel,” said Brooks. “In the end we got there, but that kind of stuff, I think, is not going to happen when it’s [the job of] Majority Leader [Mitch] McConnell (R-Ky.), who was one of the strong voices pushing Harry Reid to free up the $250 million emergency appropriation [for the Iron Dome].”

Rabbi Jack Moline, executive director of the NJDC, does not believe Republicans will take control of the Senate, citing races in states such as Georgia, where Democrats are relying on an aggressive get-out-the-vote effort among a growing demographic of young and non-white voters to deliver the seat of retiring GOP Sen. Saxby Chambliss to Democratic nominee Michelle Nunn.

“I think bicameral Republican [majorities] in Congress will be problematic for the social issues that are of concern to 70 percent of the Jewish community,” said Moline. “I think it’s a pretty fair bet that you will see attempts to stymie meaningful immigration reform, you’ll see attempts to further restrict the ability for women to control their own health care.

“I think you will find problematic approaches to religion in government from a Jewish perspective,” he added. “I think that initiatives to create equal pay for equal work and to raise the minimum wage would be frustrated by a philosophy … that is more identified with the Republicans than the Democrats.”

Moline noted that the Pew Research Center’s 2013 survey of U.S. Jews showed that 70 percent of respondents still identify as or lean Democrat compared with only 22 percent identifying or learning Republican.

Unlike Brooks, Moline does not see a shift in control of the Senate changing American foreign policy in the Middle East.

“I think there will probably be some tension between the president and the Senate over his pursuit of certain foreign policy objectives, but I don’t think that’s any different from the way things are now,” he said.

dshapiro@washingtonjewishweek.com

Looking for Answers

Michael Zeisler and his wife, Elizabeth, encourage those of Ashkenazi descent to  undergo genetic testing. (David Stuck)

Michael Zeisler and his wife, Elizabeth, encourage those of Ashkenazi descent to
undergo genetic testing. (David Stuck)

On the day almost five years ago when a neurologist told him the tremor in his right hand was a symptom of Parkinson’s disease, Andrew Katz cried all the way home.

His father had suffered from the disease, and he knew what it could mean for his future. Still, Katz, who was 62 at the time, was grateful that his disease was at an early stage. He chose not to take medication and was determined to live his life normally for as long as possible. At the same time though, Katz wanted to learn all he could about Parkinson’s and what was being done to find a cure.

“I started doing some investigating and decided I needed the care of a neurologist who specialized in movement disorders,” he said.

Katz also became well informed about the resources available in Baltimore’s formidable medical community. When he discovered that Johns Hopkins University School of Medicine was one of 32 clinical sites across 13 countries conducting the Michael J.Fox Foundation-sponsored Parkinson’s Progression Marker Initiative (PPMI) studies to identify and validate biomarkers of Parkinson’s disease, Katz decided to see if he qualified.

Since PPMI research commenced in 2009, scientists such as Hopkins associate professor of neurology Dr. Zoltan Mari, chief investigator of the JHU-based consortium site, have studied multiple cohorts, collecting clinical, imaging and bio-sample data that may help them to better understand why people get Parkinson’s and how it progresses. Of particular interest is the genetic arm of the study that follows the progression of the disease in people who carry mutations on their LRRK2 or (less frequently) on their SNCA genes.

These mutations are found in 20 percent of Ashkenazi Jews as compared with only 2 percent of the general population. Of the 20 percent of Ashkenazi Jews who have the mutations, Mari said 70 percent will be stricken with Parkinson’s disease at some point in their lives.

“It’s an interesting disease,” said Katz. “I call it a salad-bar disease. There are a whole lot of symptoms, and every patient is unique.”

Nowadays, Katz has tremors in both hands as well as a tremor of his head. Sometimes he experiences stiffness and cramping. He manages his symptoms with a mild medication regimen and regular exercise. Compared with other Parkinson’s patients, Katz counts himself as “lucky” since his disease has progressed relatively slowly. Mari said that in patients diagnosed as younger adults, such as actor Michael J. Fox, who was diagnosed at age 30, the progression of the disease is usually more rapid. In addition to the symptoms Katz described, Parkinson’s can also cause slowed movement, loss of spontaneous and voluntary movement, rigidity, postural instability including problems with standing, walking, balancing and coordination. Patients may also suffer from “non-motor” symptoms such as cognitive impairment, depression, anxiety, sleep disorders, constipation and the loss of sense of smell.

“If we can understand the LRRK2 mutation and why it causes Parkinson’s disease in most people but not all people who have it, we can learn what protects the 30 percent who don’t get [Parkinson’s],” said Mari. “That could help us help all [Parkinson’s] patients — not only those with the mutation.”

Although Katz has not yet received the results of his genetic testing and does not know if he is a carrier of an LRRK2 or SNCA mutation, the brain scans he underwent as part of his enrollment in the PPMI study did show an abnormality in his brain function and formally confirmed his Parkinson’s diagnosis. He was accepted into the study.

While he is not part of the PPMI study, Michael Zeisler of Owings Mills also noticed a tremor in his right hand at age 62.

“The doctor took one look at my tremor and said, ‘You have Parkinson’s.’ That’s not what you want to hear,” Zeisler shared. “He tried to buck me up. ‘People don’t die from this. We’ll work to keep the symptoms manageable.’”

Like Katz, Zeisler, who is now 73, said his disease has progressed slowly. He was tested for the LRRK2 and SCNA mutations but did not have them. Nevertheless, he and his wife, Elizabeth, who serves as an ambassador for the Michael J. Fox Foundation, encourage other Ashkenazi Jews to undergo the genetic testing in order to grow the PPMI database. With more data, the Zeislers said scientists will gain the information they need to prevent, treat and ultimately cure Parkinson’s disease.

“I don’t expect there will be a cure in my lifetime,” said Zeisler. But he’s hopeful that future generations will be spared the suffering that he and so many other patients and their families have endured.

Katz shares Zeisler’s hope. “For me,” he said, “I’m not so concerned. Everything I do is for my kids. I just want them to find a cure.”

Arita McCoy coordinates the Johns Hopkins PPMI study. She explained that enrolling in the study is simple and free. Study applicants are asked to take a saliva test and are scheduled to meet with a genetic counselor. Each participant is given the option whether to receive their genetic testing results or not.

“This is an observational study so there are no drug trials,” said McCoy. In addition to the saliva test, study participants receive blood tests and brain scans. McCoy said the PPMI study team is actively recruiting people with Parkinson’s who are of Eastern European (Ashkenazi) Jewish, North African Berber or Basque ancestry and individuals without Parkinson’s who are related to someone with the disease and who are of Ashkenazi, North African Berber or Basque ancestry. She reminded prospective study subjects that JHU is only one of the 32 study sites.

“If Baltimore isn’t convenient,” she said, “candidates can probably find a study site closer to home.”

For additional information, contact McCoy at 410-955-2954 or visit michaeljfox.org/ppmi/genetics.

sellin@jewishtimes.com

Just Screen It

 Depiction of autorecessive inheritance in Tay-Sachs disease. (Cburnett via Wikimedia Commons)

Depiction of autorecessive inheritance in Tay-Sachs disease. (Cburnett via Wikimedia Commons)

For most people, the chances of being a Tay-Sachs carrier are one in 250. But Ashkenazi Jews face far worse odds with a “high-risk” carrier rate of one in 30, according to the National Tay-Sachs and Allied Diseases Association (NTSAD).

Yet, through screening, Tay-Sachs has been less prevalent in recent years among the Jewish population. Before couples could screen for it, one in every 3,600 Jewish babies had the disease, according to Mimi Blitzer, professor of pediatrics and head of the Division of Human Genetics at the University Of Maryland School of Medicine.

“The number of Jewish couples who have Tay-Sachs children has gone down significantly due to testing,” said Blitzer. “Now, through testing, the number of Jewish babies born with Tay-Sachs is very low. But this disorder occurs in every population. We are now seeing more cases of Tay-Sachs offspring in non-Jewish couples than Jewish couples.”

While Tay-Sachs can strike later in life, most cases emerge in infancy. The victims develop normally until approximately 3 to 6 months of age, when they begin to experience a loss of motor skills and visual acuity, progressive weakness and an increased startle response. Eventually, they become totally immobilized and unresponsive. Most die before their 4th birthday. In order for a child to inherit Tay-Sachs, both parents must be carriers. That puts children at a 25 percent chance of having the disease at birth.

While the incidence in the Jewish community has decreased, the disease affects other groups who are at risk, including French-Canadian, Cajun and Irish-American populations. According to NTSAD, a carrier study at the Einstein Medical Center in Philadelphia is focusing on the Irish community.

Surprisingly, Blitzer said that the only Baltimore family she is currently seeing with a Tay-Sachs child is not Jewish.

“Tay-Sachs is known as a Jewish disease, but screening has made it easy to combat,” she said. “Once a couple discovers they are Tay-Sachs carriers, they have many medical options to still conceive a healthy baby.”

Non-Jewish mother and pediatric nurse Desiree Hopf lost her son, Conner, when he was just 22 months old. While she is Catholic and her husband is Methodist, the couple from Columbia both carried the recessive gene.

When the Jewish community of Baltimore started its first voluntary screening program in 1971, thousands of people were able to find out that they were carriers prior to pregnancy. While there is a huge outcry to screen in the Jewish community, many non-Jewish couples do not think about it, affirmed Hopf.

“After losing Conner, I want people to know that it is not just a Jewish disease anymore. Anyone can be a carrier for Tay-Sachs,” said Hopf. “It has been so publicized in the Jewish religion that most Ashkenazi Jews get screened. We have to pass that message onto everyone.”

The Hopfs experienced a series of indicators, including behavioral and health changes, before their son passed away.

“We found out that Conner had Tay-Sachs when we realized he was not hitting his 6-month milestones,” said Hopf. “We drew blood and found he had the disease. By 16 months, he didn’t smile. By 19 months, he could not coordinate smiling. By 21 months, he contracted pneumonia, and at 22 months, he passed away.”

With new advances in screening, saliva and blood tests are able to detect Tay-Sachs quickly and more effectively. While the saliva genotype “spot test” has a 90 percent detection rate in Ashkenazi Jews, a more thorough sequencing from a saliva sample examines the whole length of the gene and has a 99 percent detection rate in everyone. Blood tests are also highly effective with a 98 percent detection rate. Since the number of Tay-Sachs carriers are still the same, screening is crucial to lessen the number of children with Tay-Sachs being born.

“We want to give access to as many screenings as possible, preferably before they get pregnant,” said reproductive geneticist Evelyn Karson, a medical consultant for genetic screening company J Screen. “Screening is important even if you and your partner are not Jewish. We all have some broken genes with changes that keep them from working properly.”

Retired Baltimore resident and Jewish Museum of Maryland volunteer Ilene Cohen discovered that she was a Tay-Sachs carrier when she was tested in college.

“Since I was so young and single when I found out, I feared my children would have Tay-Sachs,” said Cohen. “My whole family got tested, and we discovered my dad was a carrier. Luckily, my husband was not, but it is still scary to think about.”

In Baltimore, Dor Yeshorim offers premarital annual screenings at Ner Israel Rabbinical College and Bais Yaakov School for Girls as well as appointments with local physicians.

Michael Ring, Baltimore’s Dor Yeshorim representative, stated that the organization’s “goal is to prevent double carrier matches in an anonymous, safe fashion that is also convenient. Most importantly, we follow the guidelines established by respected rabbinic authorities in dealing with this very personal information.”

In addition to Dor Yeshorim, J Screen screens all over the country and has a representative in Washington, D.C. Founded in September 2013, the company now offers mail-in home kits for potential Jewish carriers to get tested.

“Our saliva tests are easy, postage free and affordable,” said Washington representative Hillary Kener. “Last Wednesday and Thursday, J Screen came to the Baltimore federation’s Employee Health Fair. By bringing our tests to local communities, we are spreading awareness.”

While research is ongoing, including at the National Institutes of Health in Bethesda and in university labs throughout the country, there is no cure for the disease. Scientists are hoping to replace the defective gene responsible for Tay-Sachs with a corrected copy, explained Staci Kallish, a clinical geneticist and a board member at the NTSAD.

Tay-Sachs research has entered the animal-testing phase; monkeys are undergoing tests that were successful in smaller animal models such as mice and cats. In other studies, scientists are exploring the possibility of removing stem cells from the blood of an affected person, performing gene therapy and then replacing the stem cells. Since at least 2002, NIH has been recruiting Tay-Sachs sufferers for observational studies only. No clinical trials on human subjects are underway.

While feeding tubes may prolong life for a Tay-Sachs patient, the emphasis is on prevention. Before deciding to have a child, the NTSAD recommends that couples be genetically tested — usually just a blood test — to see if they are carriers.

Despite the decline in the Jewish community, there are still families who suffer with Tay-Sachs children today. One Jewish mother of a child with Tay-Sachs wonders what her 2-year-old son Russell would be like without the disorder.

His “muscles are getting tighter, and he’s losing his eyesight,” said the Rockville mother, Melanie, who preferred that her last name not be published. “He’s starting to have seizures.

“Who would Russell be without this disorder? I wish that the essence of Russell could have come into a healthy body,” she continued. “That’s what I wish for. I wish that Russell could have a full and healthy life.”

Because Melanie was in her 40s when she wanted to have children, she and her husband conceived both their children with donor eggs. Melanie and her husband are Ashkenazi Jews, but the woman who supplied the donor eggs for both boys is not. However, she was a carrier nonetheless.

“We have the screening, and we have the tools,” said Karson. “The most important thing to do is take the test before it is too late.”

afreedman@jewishtimes.com
spollack@washingtonjewishweek.com