Polman Speaks at National Council of Jewish Women Luncheon

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National political columnist Dick Polman of NewsWorks was the featured speaker at the National Council of Jewish Women’s Greater Philadelphia Section luncheon held at Reform Congregation Keneseth Israel in Elkins Park on Sept. 20. The former political reporter for the Philadelphia Inquirer has covered every presidential campaign since 1988 and spoke about “Who’s Going to Win the Most Critical Election of our Lifetime?”

An ‘Extreme Pragmatist’ and ‘The Most Beloved Man in Israel’

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Former Israeli Prime Minister Shimon Peres has died at the age of 93.

HB 2107 Amendment Prohibits Contracts with BDS Companies

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In a unanimous vote, an amendment was added to HB 2107 today and passed by the Pennsylvania Senate State Government Committee.

 

HB 2107 “prohibits the Department of General Services from contracting with certain companies” unless “the company is not currently engaged in a boycott of a person or an entity.”

 

The company is also prohibited from engaging “in a boycott of a person or an entity.”

 

The bill itself passed earlier this year in the House.

 

The amendment today prohibits “the state of Pennsylvania from signing into a procurement contract with any company who performs a boycott, divestment, sanction (BDS) against Israel.”

 

The bill will have a reading on the Senate floor and referred to the Senate Appropriations Committee for further consideration, which will occur two weeks from now.

StandWithUs Philadelphia issued a statement in support of the measure.

“We are proud that Pennsylvania joined the ranks of those states that are actively fighting the anti-Israel, anti-Semitic commercial attacks against the only democracy in the Middle East. We thank the Senate committee for its unanimous vote; clearly, legislators recognize the divisive nature of the BDS movement and the need to protect the state’s economy,” Director Joseph Puder said.

Contact: [email protected]; 215-832-0737

Ask Miriam | After the Advice

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Just in time for Rosh Hashanah, Miriam follows up with readers who have asked her for advice over the years.

Dear Readers,

As we prepare for Rosh Hashanah (the Jewish New Year), we often go back and account for the past year, reviewing our actions and deciding what kinds of decisions and changes we may want to make in the coming year. As I’ve started that process, I’ve found myself wondering what’s happened to many of the people who have asked me questions over the past several years. While certainly I’ll never hear from everyone or know how most of the dilemmas turn out, I was able to find out about the aftermath from a few readers.

I hope you enjoy these updates. If you’ve asked a question and want to provide an update (anonymously, of course), contact me through the Jewish Exponent, and I’d be happy to share your story as well. In the meantime, I hope these follow-ups provide some opportunity for reflection on the choices you’ve made and advice you have (or haven’t) taken.

1. Mommy Madness
This question asked about how to avoid getting involved in needless arguments with other moms about parenting. I heard back from this question asker via email, and it sounds like my approach was effective. I feel super accomplished that I helped quash some “Mommy Wars.”

She says, “I took your advice to heart on this one. The first thing you said that made sense was to disengage from those conversations online. I actually think I unfollowed some “mommy groups” on Facebook as a result of that advice. Then for in-person interactions, the phrase you suggested, “We made the choice that was best for our family,” has become a bit of a mantra of mine, and I’ve extended it to, “Every family makes the choices that are best for them.” It really works. I was also amazed that you channeled me perfectly by pointing out two exceptions, vaccinations and circumcisions, and beautifully explaining why it’s OK to have strong opinions on those things. Lastly when you said, “Naming the situation as ‘mommy wars,’ does seem like it would make people defensive,” well maybe that seems obvious, but it hadn’t occurred to me that I was making the problem worse by doing that — so I stopped!”

2. Coffee Caper Witness 
In this question, a man witnessed what he thought was a petty crime at a coffee shop and wasn’t sure whether or not his involvement would help anything. The asker shared that after reading my advice, he went back to the coffee shop and told the employee that the guy had stolen the coffee. The barista was very appreciative and said he felt relieved to know he hadn’t imagined it. The reader continued, “The next time I went in, he asked for my name and told me not to pay for my bagel and coffee. He said, ‘I got you today. That was awesome.’” Turns out honesty feels good and can also have unexpected rewards.

3. Merry New Year
In this column, I advised an American Jewish woman married to a Russian Jewish man about how to handle Russian New Year’s celebrations that look a lot like Christmas. She says, “I admit at first, I was taken aback by your advice — I had been so sure you would be on my side. Your advice about treating the situation like an interfaith couple might was very helpful, particularly the terminology of calling us an “intercultural” couple. I am so grateful for how aligned my husband and I are Jewishly that I sometimes forget we got to that place via totally different roads. So when New Year’s came around, I politely asked that no photos of my kids would be taken around the ‘New Year’s Tree,’ and other than that, fully participated in the celebration.” Sounds like a great compromise.

4. Not  Your Bubbie’s Social Club
This question concerned how to make Hadassah more appealing to a younger generation. When I was first asked, I was worried that any response I gave would come across as dismissive. However, the person who asked the question reported back that her Hadassah chapter did begin to think more creatively about getting people of different ages involved and also emphasized membership less and participation more. They held a couple of successful fashion shows, and even if young adults weren’t on stage, they attended to support their older relatives.

From my side as a writer, I came to regret the title I gave to this post. Besides being overused, the construction, “Not Your Bubbie’s …” shows a lack of respect for the older generation and for the sense of traditionalism that drives much of my connection to Judaism as well as my connection to my family, and indeed, even my Bubbie. There are real generational divides that can and should be bridged, discussed and dealt with effectively for all parts of the community, and for my part, I should have used a more respectful title to illustrate that.

5. Bris Debate
This question, about whether or not to circumcise one’s Jewish sons, is probably my most-shared column to date. As per the “mommy wars” question above, I share it in mommy’s groups whenever the question of circumcision comes up (which it does, all the time, sometimes more respectfully than others). It’s also personal, since this link is actually a repost from when my own son was born. The original poster responded with this: “Well, I have two circumcised sons now, so there’s that.”

Whether it’s about family, services, or Bubbie’s apple cake recipe, I hope everyone gets good advice this holiday season and has many meaningful opportunities to reflect on where you’ve been and where you’re going.

Shanah tovah, happy new year and be well,
Miriam

Reconstructionist Arts Camp Opening on West Coast

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Camp JRF, a Reconstructionist camp in the Poconos, has announced plans to open a “film and arts-based specialty camp” in Southern California.

Picnic Begins 60th Anniversary Celebration for Perelman Jewish Day School

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More than 500 people attended at the picnic, which featured food, dunking booths, dancing, a band and assorted games, although the kids largely were doing what they do best — running around and creating their own diversions.

Study Shows How Jewish Vote Could Play Crucial Role in Key States

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The study found that in Bucks County, Pennsylvania — one of the areas closely watched this election cycle — Jewish adults make up more than 6 percent of the population.
 

Bala Cynwyd Woman Not Letting Cystic Fibrosis Slow Her Down

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Emily Kramer-Golinkoff has put herself into the future of cystic fibrosis.

So much so that she’s donated millions of her own cells to spur research to find a cure for a rare form of cystic fibrosis.
It came as a shock when Kramer-Golinkoff was diagnosed with cystic fibrosis (CF) at just 6 weeks old.
“My parents were like most out there, unknowing carriers, and I was their first kid. It never occurred to them that your baby could be born [with it],” she added.
Cystic fibrosis is a progressive genetic lung disease that is fatal. It can also affect other organs and cause gastrointestinal problems or cystic fibrosis-related liver disease, diabetes or arthritis, the latter two of which Kramer-Golinkoff experiences.
“It really is the disease that keeps giving,” she joked.
But at 31 — the life expectancy of the disease is 37 — she’s not giving up any time soon.
While there have been great strides in the past few years to treating cystic fibrosis, Kramer-Golinkoff from Bala Cynwyd has a rare form of the disease, the Ashkenazi mutation, which hasn’t seen the same progress.
“About five years ago, as some of these big breakthroughs were coming down the pipe and I was getting sicker and sicker, I started to dig into the research,” she remembered. “What I found was really disheartening. There was very little work being done on this Ashkenazi mutation. I was trying so hard to find hope that I could cling on to, and I couldn’t find any. I had this terrible wake-up moment that at the current rate there wouldn’t be a breakthrough in time for me, most likely. So it was from that place of desperation really that Emily’s Entourage was born.”
Kramer-Golinkoff started Emily’s Entourage to try to find a cure for the rare condition that she and many others suffer from.
In four and a half years, she’s raised $2 million.
“The money that we’re raising is just a means to an end,” she continued. “What we really want to do is [find] fast breakthroughs. We sort of realized in this process that the way the biomedical system, research and drug development in medicine happens now is extremely methodical and slow. For people like me, whose lives depend on progress, that’s really frustrating.”
The traditional medical system usually means waiting until scientists share their research in a published journal.
For someone like Kramer-Golinkoff, who has about 35 percent lung function, “I don’t have time for that.”
Through the funds and creating cooperation among scientists, the industry, patients and foundations, she hopes to disrupt that process.
“We’re bringing people together in intimate rooms and trying to get them to work together and share data in real time and pool all of their ideas and projects so that we can really strategically go after this as a team and trying to save lives — and maybe get some published papers along the way,” she noted.
Kramer-Golinkoff’s donated cells have been a major part of the process. What was preventing some sort of cure for the Ashkenazi mutation was a lack of cell models because it is so rare to begin with.
“Although this mutation is relatively rare among the CF population, it’s caused by a cellular defect that is the same cause of about one-third of all genetic diseases. It’s called a nonsense mutation, and so we’re kind of thinking of the Ashkenazi mutation of CF as a prototype to potentially crack the code for tons and tons of different patients suffering from a wide variety of different diseases,” she said.
Because cystic fibrosis is a progressive disease, Kramer-Golinkoff started out as a relatively healthy kid. She still did her treatments every day and had to go to the hospital when she got sick, but “we became masters at integrating my treatments into everyday life. I would do my IV treatments in high school classes.”
Her friends and family were always supportive; they never made her feel ashamed of it.
“When my mom would scream outside and tell me it’s time to do my treatments, my friends would race inside because it was the highlight of their day,” she recalled. “It was almost just factual. I have brown hair. I have to brush my teeth every night. I have CF. I have to do my treatments every day. It was just a fact of life.”
She still takes her breathing and airway clearance treatments every day for an average three to four hours — if she’s healthy — in addition to about 30 pills and four insulin injections.
“And that’s at best,” she laughed. When she’s sick, she can be in the hospital for weeks on antibiotics.
“Truthfully, the hardest part about living [with CF] at this point is that I’m 31 and I have big eyes and all these things I want to do in the world and, in so many ways, I’m sort of held back by this body that’s a lot frailer than my mind or spirit,” she admitted. “I have to be so deliberate with how I use my energy and it feels in many ways like I have to hold back, and that’s a really frustrating thing to do when it should be the peak of your life.
“It’s a constant burden being painfully aware of the uncertainty of the future; knowing that all it takes is just one small cold,” she said in a calm, strong voice.
“I’m walking against the current trying to achieve stability, and if I knew that I could stay here forever, that would be the greatest gift in the world, but I know that’s not the case. I have lots of friends with CF — I know what the course before me is, and it’s not fun.”
Kramer-Golinkoff wants to travel the world and one day write her own book sharing her story, but for now, her goals are focused on solving cystic fibrosis and her own health.
Emily’s Entourage has motivated her, and she travels across the country to attend speaking engagements and symposiums for her mission.
But it’s not just for her.
“There’s a lot of people in the world who deserve hope for a future. We need to design the system that overcomes a lot of the operational barriers so the only thing that stands between us and the cure is science.”
For her work, Emily’s Entourage has been honored by the White House, named the Champions of Change for Precision Medicine.
Her organization will be hosting the fifth annual Evening with Emily’s Entourage gala on Dec. 3 at Moulin at Sherman Mills to continue raising awareness.
“It’s really important because it’s not just about a rare mutation of a rare disease. It’s a lot bigger than that. There’s a lot of other diseases like Duchenne muscular dystrophy or even many forms of cancer that are caused by this same nonsense mutation. It’s much bigger than just about me or about CF even.
“Particularly for the Jewish community, between one in 25 and one in 27 Ashkenazi Jews is a carrier of CF, which is as much or more as Tay-Sachs.
“A big part of the mission is trying to bring awareness and let the Jewish community know that this is our disease. Many of the folks with CF are benefiting from huge advances but the Ashkenazi mutation is not, and it’s up to us to change that.”
Contact: [email protected]; 215-832-0737

Mother Turns Sadness Into Advocacy

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The Singer family

Dylan Singer’s room looks just the way it was before he died.

Sesame Street posters adorn the walls, including one of Elmo with Dylan’s name printed next to him. A plush Barney character sits patiently on his neatly made bed.

Dylan Singer lived 19 years with familial dysautonomia (FD), an autonomic nervous system disorder. He was a big brother and a loving son, grandson and nephew.

And his story is one his mother, Cindy, hopes will live on for others.

Testing for FD was not available until Dylan was about 8 years old, Cindy Singer said.

“It was a sort of an odyssey getting to a diagnosis because nobody had even heard of the disease,” she said, noting she was a carrier of Tay-Sachs.

Born in November 1996 at 5 pounds, Dylan started exhibiting symptoms of FD early on, such as not swallowing or being able to control his body temperature. But without knowing what the disease was, it was difficult to understand what was happening.

After a few months where it seemed Dylan’s health was worsening and doctors brushed off her concerns as just those of a hysterical new mother, Singer was able to get Dylan admitted to Children’s Hospital of Philadelphia where he was, “through a stroke of God,” finally diagnosed with FD that February.

“I brought him home and from there — there’s no parenthood manual let alone a manual for taking care of a special needs kid,” she said, “and so I was probably close to having a nervous breakdown as you could get because first of all, it’s nobody’s part of the plan to have an unhealthy baby. It doesn’t enter your mind when you’re young and having children, you just assume you’re going to have a healthy baby. So if somebody told me I could have a do-over, I probably would have done it over.

“But then, I guess by May, I was out with him somewhere and he smiled at me and that was it, he was mine and I fell in love with him,” she recalled. “From that point on, I not only became his mom, but I became his advocate.”

Since he passed in April 2016, Singer is focused on ensuring his story lives on.

In spite of his illness, Dylan was a happy kid, Singer recalled, wiping away tears.

“As sick as he was, he laughed a lot,” she said. “He loved Blue’s Clues and Barney because they were developmental issues for him. But he would retch a lot and be very nauseated but once it passed, he was done. He had every reason to be angry or depressed but he wasn’t.”

He would sit on the couch with Singer or her father, Dylan’s Pop-Pop and “buddy,” and watch TV or play on the computer. Books he liked to read are still on a shelf in their living room.

He went to school at the Springtime School in Newtown, which is geared toward individuals with autism “because Dylan was nonverbal and he communicated with an iPad, but he had to be taught the same way one who was on the spectrum would be taught,” Singer explained.

And while people might have underestimated him or made wrong assumptions about Dylan’s intellect and ability to express emotions, he was bright, Singer said. She recalled with a laugh a time she was shopping for bathing suits and received a call that Dylan had told his Pop-Pop he loved him through his iPad, which made Singer cry — and caused a saleswoman to reassure her they would find her a bathing suit.

“It showed the depth of his feeling that people underestimated him,” she said.

His disease created a new normal for the Singer family. They learned to “divide and conquer” when it came to giving Dylan attention as well as spending time with their younger son, Brandon. Singer said he is an FD carrier.

“I had genetic testing done with my second child and if Brandon had come back affected, I would have terminated that pregnancy because I would never put another child through what Dylan had experienced through all of his 19 years,” she said. “However, I wouldn’t change what I had with him because he brought more joy than he brought pain. It changes your life.

“As sick as he was, it’s also how much life he had, too,” she continued. “He had as much life as he had illness.”

This past year was a bad one for Dylan. He fought pancreatitis and rebounded, but Singer noticed differences in him.

One day in April, “he wasn’t quite feeling himself, but I was not unused to that,” Singer said, eyes welling with tears. His blood pressure was up, which Singer said was also not unusual, but she couldn’t get it down despite giving him medication. When Dylan said he wanted to move from the couch to the floor, Singer said to her husband, “he’s going to have a seizure.”

He had been taken to the hospital for seizures before, so this was not out of the ordinary, but Singer remembered thinking there was something different about this one.

He was airlifted to CHOP after seizing for six hours without stopping “and by the 12th hour of trying everything they could to calm him down, they had to put him on pentobarbital, which is basically general anesthesia to stop him, and that was the only thing that would stop his seizures.”

“I knew there was severe brain damage there. And I knew then that he wasn’t going to be the same that we had,” she said.

After placing Dylan in a medically induced coma for several days, the Singers made the difficult decision to take their son off of life support and allow him a peaceful end. His quality of life was their priority, Singer said, and she and her husband did not want Dylan to live being unable to roam in their home as he had or have to constantly go back and forth to the hospital.

He was buried in his airplane pajamas, chosen by Brandon so he would fly to heaven, and surrounded by his favorite figurines.

His life inspired Singer to start doing speaking engagements for the past few years with Dr. Adele Schneider from the Einstein Victor Center for the Prevention of Jewish Genetic Diseases, where a fund was also created in Dylan’s honor. The Dylan Singer Educational Fund at the Victor Center has close to $20,000 from the community earmarked for educating the community.

“I want people to know that his life has meaning,” she said. “And that first and foremost he was our child, grandchild, brother, but he was also this involuntary hero who had no idea what his impact could mean to others. And that through his life and his struggles and his death, hopefully, we’re going to prevent this broad community who still tells me they never even heard of this disease that they need to be screened.”

She works with Rabbi Larry Sernovitz — who was an associate rabbi at Old York Road Temple-Beth Am, which Singer attended, before he moved to Temple Emanuel in Cherry Hill and whose son also has FD — to create awareness, especially in the rabbinic community.

Sernovitz will also lead Brandon’s Bar Mitzvah in March. His mitzvah project focuses on creating awareness about Jewish genetic diseases.

Singer hopes Dylan’s story appeals to both Jews and non-Jews, as it is not only Jews who can be affected by genetic diseases and need to be screened, she said.

A makeup artist for her own company, Dylan Michael Cosmetics, “I do a lot of weddings and I don’t let a Jewish bride sit in my chair without sharing Dylan’s story and without telling them that they should be screened. And I’m very blunt. Like, ‘This is a no brainer; you have to be screened.’”

“I would want people to know we were a happy family in spite of this,” she said, adding she owes her husband for his support for her speaking and advocacy, and her parents for letting them move in with them to support Dylan. “I wouldn’t want people to have this image that we were always crying. We really weren’t. You learn to adapt and make the new normal.

“The thing that makes me the most sad is I don’t want people to forget him. I want people to know that I had this amazing child and, for whatever reason, he was given to me, and I want people to know that he may have only lived to be 19, but his life in some way will impact the future of other people’s lives.”

Contact: [email protected]; 215-832-0740

Jewish Genetic Diseases Go Well Beyond Tay-Sachs

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Familial dysautonomia. Canavan disease. Niemann-Pick disease. Bloom syndrome.

If these sound unfamiliar, it’s probably because the first thing that comes to your mind when you think of Jewish genetic diseases is most likely Tay-Sachs disease.
You’ve probably even gotten tested for Tay-Sachs, as it occurs most commonly in people with Ashkenazi Jewish heritage, though it is not the only Jewish genetic disease despite being perhaps the most well-known.
“It is estimated that nearly one in three Ashkenazi Jews in the United States is a carrier of at least one of 19 Jewish genetic diseases,” according to the Jewish Genetic Disease Consortium’s website.
However, as geneticists can tell you, technology has gotten more and more advanced — there are tens more diseases, maybe even hundreds, to be tested for these days.
Grouped together as Jewish genetic diseases — though they don’t all only show up in Jewish people — some of these gene mutations can show up in all populations.
“This term describes a group of conditions which are unusually common among Jews of Ashkenazi, Central and Eastern European descent,” per the Norton and Elaine Sarnoff Center for Jewish Genetics’ website. “Although these diseases can affect Sephardi Jews, non-Jews, and those from mixed backgrounds, they appear in those of Ashkenazi Jewish descent more often — as much as 20 to 100 times more frequently.”
With that in mind, there is one thing Dr. Adele Schneider wants you to do: Get screened.
Even if you aren’t Jewish, there may be Ashkenazi lineage in your heritage, so testing is important.
Schneider, the medical director at the Einstein Victor Center for the Prevention of Jewish Genetic Diseases in Philadelphia, has been working in genetics since she was in medical school.
For her pediatrics rotation, she was taken to a school and worked with children with physical and intellectual disabilities and loved the experience. Mixing this new passion with her interest in biochemistry, genetics seemed like a good fit.
And since she started working at Einstein, working with Jewish genetic diseases was even more of a natural fit.
She helped start the Victor Center along with founder Lois Victor — who herself lost two children to a Jewish genetic disease — in 2002 and created education programs and screening opportunities in Philadelphia and beyond.
“Genetics is a lot different than it was back then,” she said, reflecting on her start in the field back in the ’70s. “There’s much more to know now, more testing you can do, more you can learn — it’s an amazing field, it’s just growing daily.”
With that, she encourages others to learn more and think beyond Tay-Sachs.
“In the early 2000s, people thought only Tay-Sachs was what you needed to be screened for,” she said. “Then there were six and then nine and 11 — the number has increased exponentially as technology in genetics has advanced. Now that the technology has really advanced, you can screen for hundreds.”
Although there are panels for nearly 100 diseases to screen for today, Schneider said there isn’t really a specific number anymore.
“Mount Sinai in New York, which is really what I would call the leader in Jewish genetic disease screening, has a panel of 96 or 98 diseases,” she said, “which is Ashkenazi, Sephardic and diseases that affect all populations.”
Some diseases that have become more common don’t only affect Jewish people, such as cystic fibrosis or Gaucher disease. Pan-ethnic screenings are recommended for that reason.
“Nowadays, what we’re talking about more is screening everybody and being aware that people don’t know their ancestry. You might find somebody who doesn’t identify as Jewish but is carrying a mutation that is a Jewish genetic disease,” Schneider explained. “We’ve moved away from only Jewish genetic disease screening because so many people are intermarrying and we have to screen the partners.”
Getting screened is as simple as a blood test, and Schneider recommends to get screened as you think about starting a family but before becoming pregnant.
“We are trying to educate people to do that because that’s when you have the most reproductive options,” she said. “If you get screened and you know you’re a carrier and your partner is a carrier for the same thing, there are reproductive options.”
If both partners of a couple are identified as carriers of the same recessive condition, the couple has a 25 percent risk with each pregnancy to have a child affected with that disease, according to an informational brochure from the Mount Sinai Center for Jewish Genetic Diseases.
“The couple also has a 50 percent chance with each pregnancy to have a child who is a carrier with no symptoms of the disease,” read the brochure, “and a 25 percent chance to have a child who does not inherit a gene mutation from either parent and is not a carrier.”
So in all, there is a 75 percent chance of a healthy baby, Schneider added.
One way couples can get pregnant and test for the disease is through in vitro fertilization (IVF), which Schneider said has become very common. This allows them to test embryos and see which will be just carriers and which will be affected by a disease.
If couples choose to get pregnant “the regular way,” as Schneider called it, there is still the one-in-four chance in each pregnancy the child will be a carrier and 75 percent chance of a healthy baby.
This method also allows the couple to decide if they want to continue the pregnancy depending on the test results — which takes about two weeks, Schneider said — and is “more difficult because it usually involves keeping or terminating a pregnancy.”
She encourages people to visit the Victor Center for screenings and meet with the genetics counselor there to learn more about what the diseases mean for them. She particularly recommends that those who were screened in college and are now getting married get screened again — this typically includes those in their 30s.
“When they were screened, they were not screened for all the diseases there are now,” she said. “The first time I did a screening was in 2000 at Penn Hillel and those people are now mid-30s, many of them are married now and many came back for more screening.”
At that time, they screened for just six diseases. There are, of course, many more than six diseases to screen for now.
The Victor Center works with Jewish young adult and young professionals groups as well as rabbis and other community members to raise awareness about Jewish genetic diseases and getting screened.
“People should know that everybody of reproductive age should get screened and if you have Jewish ancestry, make sure you get screened for all the relevant diseases,” she said, emphasizing, however, the message is not just for one population. “It’s not just Jews now, it’s everybody. So the message really is for everybody of reproductive age.”
To make appointments at the Victor Center, call 215-456-8722 or visit victorcenter.org.
Contact: [email protected]; 215-832-0740