Tag: health

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General CCAR parenting

Not All Jewish Genetic Screenings Are Created Equal

While most of us are appropriately immersed in issues relating to Covid-19 or racial justice, let me bring your attention to a different matter of life and death. Recently I experienced a series of very personal “aha” moments, but with professional ramifications as well. 

            In January 1986, our son Joshua Daniel died after only living for six months. The cause of death was recorded as an “unknown degenerative neurological disorder.” Our Israeli geneticist hypothesized that it was likely genetic, but beyond the scope of the pre-natal testing for Tay- Sachs and other diseases that my wife, Lynn, and I had taken. 

            We nonetheless risked having more children and were blessed with two healthy daughters, Sara and Mica. Sara recently married and Mica is engaged. Prior to their weddings, I stressed the importance of being fully tested for so-called “Jewish Genetic Diseases.” Sara went to her doctor in Houston, explained the family history, and asked for a full Jewish genetic screening. She was pleased when the results came back completely negative. 

A few months, later Mica utilized the JScreen program, based in Atlanta at Emory University, also available to anyone in the United States. Her results revealed a positive indication for a disorder, the symptoms of which sounded eerily similar to what ended her brother’s life. This was the first potential “aha” moment, a clue to solving a 34-year mystery. 

However, our focus is on the present. With almost all disorders on Jewish genetic screening panels, your partner must also be a carrier—and even if both are carriers there is only a 1 in 4 chance that a baby will be afflicted. Her fiancé, a Jew by Choice, will now be tested, but it is unlikely, with his Sikh Indian biological heritage, that he is a carrier, THOUGH NOT IMPOSSIBLE. 

The next “aha” moment came when Sara discovered that her testing at the doctor’s office in Houston did not include the disorder that Mica’s revealed. She then utilized the JScreen protocol, which showed she was not a carrier of that particular disorder, though she was positive for another less serious disorder. Subsequently, her husband also used JScreen for testing, revealing no problems.

My second “aha” is the new knowledge that not all Jewish genetic screenings are created equal:

  • Simply suggesting to couples we counsel to seek Jewish genetic screening is not enough. 
  • Simply asking a doctor, even a Jewish doctor, for Jewish genetic screening is not enough. 

I have subsequently been looking at programs for Jewish genetic disease screening throughout the country. Though I am by no means an expert, I have gained a better understanding of what is available and how we can best serve young couples with whom we engage.

First there is a misconception about the number of Jewish genetic diseases for which we should be concerned. We all know about Tay-Sachs. However, there seem to be others that receive prominent attention and are typically screened: cystic fibrosis, spinal muscular atrophy, Gaucher disease, Usher syndrome type 1, glycogen storage disease type 1a, familial dysautonomia, Canavan disease, lipoamide dehydrogenase deficiency, Bloom syndrome, Walker-Warburg syndrome, maple syrup urine disease, Fanconi anemia, Neiman-Pick disease, mucolipidosis IV, ABCC8 hyperinsulinism, Usher syndrome type 3, nemaline myopathy, and Joubert syndrome. 

However, we should urge our couples to ask for what is often called “advanced” or “expanded” Jewish screening panels, which is what identified the potential problems for both of my daughters. For example, JScreen currently covers 226 disorders, including 101 Jewish disorders (47 Ashkenazic, 37 Sephardi-Mizrahi, and 17 common to both). Compare that to my older daughter’s first screening of 165 disorders, which missed 67 of those considered Jewish disorders. 

Who should be screened? Obviously two born Jewish partners need to be tested but let me stress that ALL couples should be screened. Sadly, I have been the rabbi for a couple, whose son died of Tay-Sachs with the mother’s genetic background being Ashkenazic Jewish, but the father’s a combination of Irish/Italian/Catholic lineage. In addition, now that we know all screens are not equal, those who did not have the full advanced screening initially should be re-screened, prior to having any more children. 

I have become a big fan of the JScreen program. (www.jscreen.org)  Any couple throughout the country can avail themselves of their test kit, with a doctor’s order that JScreen collects on behalf of the patient. Through subsidies, they make it affordable for those with and without insurance. After viewing an educational video and submitting a saliva sample, individuals receive screening results, along with counseling from a professional genetic counselor. Based upon my initial survey, there are some programs that also do similar advanced screening, but I am not aware of any that serve the entire country. 

Epilogue: Lynn and I decided to be tested by JScreen in the hope that we would have a more definitive understanding as to Joshua’s cause of death. Unfortunately, it will remain a mystery. While I tested positive for the same disorder that we thought it might be, Lynn did not.

Regardless, this is clearly a matter of pikuach nefesh for our community. If anyone would like to communicate with me privately about this, I would welcome it. 

To learn more about JScreen or to request their free rabbi folder, visit www.jscreen.org.

Bob Loewy is the Rabbi Emeritus of Congregation Gates of Prayer in Metairie, LA; married to Lynn; proud father of Karen Loewy (David Widzer NY ’00), David Loewy, Sara Loewy (Paul Belin), Mica Loewy (Jasjit Singh); grandfather of Judah and Elisheva Widzer; and looking forward to more.

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gender equality News Social Justice

Rabbi Barbara Goldman-Wartell on the Anniversary of the Hyde Amendment

We read Nitzvaim the Shabbat before Rosh Hashanah and again on Yom Kippur Morning.   In this portion, we are told we have choices, to do good or bad, for our lives to be ones of blessings or curses.  The case is made for choosing blessings.  Again, we are empowered to make these choices with Moses working hard in this text and other places as God’s advocate, to steer us to make our choices for living up to our covenant with God and Torah and doing the mitzvot, those things which we are obligated to do for ourselves, for others and for God. September 30th this year was not only Rosh Hashanah and the first day of Tishrei.   September 30th also marks the 43rd anniversary of the passage of the Hyde Amendment, the policy that bars federal funding for abortion in the United States.

On the federal level, one of the most notable and longstanding restrictions is the Hyde Amendment, which was first passed in 1976 and has been renewed every year since. 

The Hyde Amendment bans the use of federal money for abortion except in cases of rape, incest, or when the pregnant person’s life is in danger in all federally administered health care plans such as Medicaid, TRICARE, and Indian Health Service. Many people that are have insurance through these plans, particularly Medicaid, are of low income. Thus, the Hyde Amendment largely and disproportionately impacts low-income people and other individuals with marginalized identities. It is reprehensible that someone would be denied their right to serve as their own moral agent for their reproductive health simply because they are insured by a federal health care plan. 

We as Reform Jews support women having choices, bodily integrity, the right to weigh their situation and beliefs and make knowledgeable thought out decisions for themselves and their families.  

Our tradition teaches that all life is sacred, and Judaism views the life and well-being of the person who is pregnant as paramount, placing a higher value on existing life than on potential life.

We learn from Mishnah Ohalot 7:6 that a woman is forbidden from sacrificing her own life for that of the fetus, and if her life is threatened, the text permits her no other option but abortion. In addition, if the mental health, sanity, or self-esteem of the woman (i.e. in the case of rape or incest) is at risk due to the pregnancy itself, the Mishnah permits the woman to terminate the pregnancy. It is due to the fundamental Jewish belief in the sanctity of life that abortion is viewed as both a moral and correct decision under some circumstances.  

The 1975 URJ Resolution on Abortion states, “While recognizing the right of religious groups whose beliefs differ from ours to follow the dictates of their faith in this matter, we vigorously oppose the attempts to legislate the particular beliefs of those groups into the law that governs us all. This is a clear violation of the First Amendment.”

 In an environment in which abortion access is becoming ever more restricted, the Hyde Amendment creates additional barriers to abortion access for women, particularly those from communities of color or with low incomes. With the High Holy Days providing an occasion for all of us to think about how we can advance justice and equity in our communities, advocating for reproductive justice – including the repeal of this harmful policy – is part of that equation.

The Equal Access to Abortion in Health Insurance or EACH Woman Act  (H.R. 1692/S. 758) was introduced into the 116th session of Congress on March 12, 2019. The EACH Woman Act seeks to repeal the Hyde Amendment, and would guarantee that every person who receives care or insurance through a federal plan or program has coverage for abortion.

If you feel compelled to take action on this matter of women’s health and free agency to make decisions about their own body,  please consider urging your member of Congress to support the EACH Woman Act. The EACH Woman Act would end bans on abortion coverage, restoring respect for each woman’s moral agency, ensuring fair treatment no matter her income, and protecting her health and safety.

Parashat Netzavim gives us the choice to act or not to act, to follow our convictions, our Jewish values and our communal interests.  Please consider your choice in acting on this matter and advocating for women to have choices in their control as well.

Rabbi Barbara Goldman-Wartell
Temple Concord, Binghamton, NY

Related resources from the RAC and from Planned Parenthood: 

https://cqrcengage.com/reformjudaism/app/write-a-letter…

https://www.plannedparenthoodaction.org/…/ab…/hyde-amendment

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CCAR Convention

#36rabbis – Why I’m Moved to Shave

Picture

I am about 2 hrs and 10 minutes away from shave-time, and it occurs to me that I should probably try to put into words why it is that I’m heading up to the local SuperCuts to shave my head for the first time in my life.
(What does it say about me that I still get my hair cut at SuperCuts?)
I should probably not be surprised that the SuperCuts website, which promotes these recommended hair styles if I aspire to be ‘cool like a rock star’, does not feature the bald look.  That’s a shame, because it turns out that there are plenty of famous rock stars that are bald.  (Yes, I voluntarily paid good money as a kid to see Phil Collins in concert.  File that under #whatnerdyfuturerabbisdo.)Anyway…I digress.  Why will I be shaving off all of my hair (at the aforementioned SuperCuts) in 1 hr 55 minutes?

To begin, you might notice from the picture above that I’ve already shaved off my beard.  (For some reason, every time I say the word “beard,” my three year old son Avi hilariously gives me a sing-song shout-out by proclaiming “your beard!!!” and then he spontaneously cracks up.  It’s funny and mysterious all at the same time).  

I’ve had a beard pretty much permanently since….college?  I typically shave the beard off only once a year: the day before Passover, as a way of connecting to the spiritual meaning of growth that I believe is implicit in the season of the Counting of the Omer.

In that sense, the first thing that is disorienting for me today is the fact that my beard is gone…two weeks early.  I’ve lost something….a part of myself….and even though the loss was voluntary…and even though it is entirely cosmetic…and even though it will (God-willing) grow back…it is a loss nonetheless.  On some level, simply by shaving my beard, I have entered into the world of grief and mourning.

There are other emotions and sensations that I am aware of.

Simply by shaving my beard, I am becoming re-acquainted with how my face feels.  It’s a funny way of saying it – but a beard is something of a firewall against certain facial sensations.  With the beard gone, I can feel again…the smoothness of my face, and in doing so: I feel…younger.

In this wonderfully liberating way (akin to when I put on a Phillies hat instead of a kippah), I feel less like a rabbi, and more like a regular person. That’s important to me right now….with 1 hr 35 minutes to go.  Because even though, on the surface, this is about rabbis (Phyllis and Michael are my colleagues, and someone decided to call this group #36rabbis), being a rabbi has absolutely nothing to do with my reasoning to shave my head.

My colleagues and I are prone to tweet pithy status updates with the hashtag #whatrabbisdo.  But, honestly, for me….a more honest description about my act might be #whatpeopledo.  Or at the very least: #whatpeopleshoulddo.

We should care, I think, that in the year 2014, when we are privileged to live in moment of history in which it is possible to accurately measure the age of the universe, and when it is possible to send messages to one another from our phones from one side of the globe to the next….I think we should care that in this moment, that it is wrong…existentially speaking…that children should inexplicably die from incurable cancer.

And so, rather than complain about it from the sidelines, I’ve decided to do something about it.  I’m going to shave my head (in 1 hr 21 minutes) to raise awareness (on the presumption that people will be asking me 1000 times over the next few weeks why I’ve shaved my head).  And I’ve made (in brutal honesty, a relatively minimal) gift of tzedakah to do my part to work for a cure.  (You can give too, via St. Baldrick’s.)

But there’s another reason that I’ve decided to go down this road.

We are supposed to say Baruch Dayan Ha-Emet when news reaches us of a loved one’s death, acknowledging that however painful the loss, that there must be a divine sense of justice/order in it.  God has God’s reasoning, even if we are not privileged to know it.

I’m relatively far removed from Michael, Phyllis, and their family.  I don’t think I ever had the honor of meeting their son Sam – I was going to write “may his memory live on to be for a blessing” but the absolutely extraordinary thing is that, from my vantage point, it already has – anyway…I never had the honor of meeting Sam (again I think of my son, Avi, and their shared identification with Superman), and yet…for me: Baruch Dayan Ha-Emet was not something I could say when I learned of Sam’s passing.

I knew it was coming.  I had been following all of the Tweets, and the Facebook messages, and had heard through the grapevine.

And yet in the moment of hearing the news, I would not and could not say the words.  There was/is to me an absurdity associated, this year, and on this day, with the notion of believing in a God that would want Baruch Dayan Ha-Emet to be recited on the loss of a child.  I have still not been able to make sense of that, theologically.  As a rabbi: sure…I would be happy to refer you to Kushner, or if we’re feeling more bold, maybe Rubenstein.

But I’m not a rabbi right now.  I’m a person.  

I’m a person that – during this entire journey that Phyllis and Michael have been on – I’m a person that only succeeded in picking up the phone once (went to voicemail) to offer my support.  Three times I sat down with pen and paper to write a real, live letter to them – and all of those wound up in the trash, along with countless draft emails.  Mostly because, as a person, I could not summon the necessary empathy…could not begin to imagine whatever it was that they have been feeling.

Yes, I’m a father.  But the fact that I’m a father I think has actually made it harder for me to empathize in this case.  Because even though the Sommers’ loss has spurred me to new heights of gratitude, in terms of appreciating the miraculous and blessed existence of Siona and Avi (I feel selfish in this moment admitting that)…nonetheless: how could that possibly enable me to connect (on some human level) to the way that their family has changed?

It is no doubt utterly selfish (yikes, there’s that word again) of me.  But I am shaving my head – not just out of a sense of solidarity with Phyllis and Michael, and all of the other friends and colleagues that are gathered at this very moment in Chicago, while I remain here in New York…but also out of the misguided hope that shaving my head will spark .00001% more empathy for me, that I might have a tiny additional sense of what it means to be a human being (and to connect to others human beings) in this world.  

To put it another way: I hope and pray that this act of ‘othering myself’ in 1 hr 2 minutes will actually have the opposite effect: that I will grow into a deeper sense of awareness, and maybe even peacefulness.  Not with God…for the time being, that ship has sailed.  I cannot claim to understand the logic of God in all of this.  But maybe a deeper sense of awareness and peacefulness with the rest of humanity….of what it means to be alive, and grateful for that gift of life…and of what it means to love, and to lose.

…הִנְנִי מוּכָן וּמְזֻמָּן

I am hereby ready and prepared: to try harder at fulfilling the mitzvah of being present for friends and colleagues; to try harder at fulfilling the mitzvah of tikkun olam by addressing all of brokenness that pervades our world; and most importantly: I am ready and prepared, to shave my head, and to perhaps attain a fuller sense of what it means to be human in the process.

Sending my hugs, and all of my love…or at least as much as the Internet can carry…to Phyllis and Michael, and to every one of my friends and colleagues in Chicago.

48 minutes to go.  SuperCuts: here I come.

Rabbi Jeffrey Brown serves at Scarsdale Synagogue Temples Tremont & Emanu-El. This was first published on Rabbi Brown’s Blog.
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CCAR Convention

It’s my parents’ fault I’m shaving my head

As I awoke this morning and ran my fingers through my hair, I tried to recall my earliest memories of doing g’milut chasadim (acts of loving kindness) and taking action for social justice.  I was flooded with memories that go back many years.

Probably my earliest memory is of my father Mark Novak running for United States Congress.

photo

I recall hanging out in his campaign office, my first ride in a convertible as we participated in a Fourth of July parade.  As a 5-year-old I’m sure I didn’t quite understand what it was he was doing, but now I know that it was one of his many efforts to put values into action.

One of my favorite family stories to tell is of my grandfather, Elmer Novak, who singlehandedly integrated the elementary schools in his small southern town of Salem, IL.  When some of the farmers came to him and said, “Mr. Novak, what are we going to do?  So-and-so’s daughter is now old enough to go to school!”  My “friend” Elmer said, “She’s going to go to school!”  And she did.

I remember collecting quarters for JNF to plant trees in Israel, and visiting the elderly at the Jewish Home.

I remember my mom not buying grapes and teaching us about the grape boycott.

I remember teacher strikes and my parents commitment to not crossing the picket lines.

I remember that dinner at Bob’s Big Boy on evening after Hebrew school when mom and dad suggested to Debbie and me that perhaps instead of getting bat mitzvah presents we should ask our family and friends to make donations to tzedakah. Debbie and I chose two temple funds that our family had been active in supporting: relief for Soviet and Iranian Jewry and relief for Cambodian and Vietnamese refugees. I still have the list of all the people who made donations, with our 13-year old scribbles of who wrote which thank you note.

Just months earlier our family had participated in sponsoring a Vietnamese refugee family so that they could find safety in the United States.  Debbie and I cleaned out our closest of clothes and toys in hopes of helping a frightened 5-year-old girl and her family (mom, dad, older brother). We helped mom pull together housewares and essentials for this family who became a part of our own.  Mom is still close today with that little girl who is now a grown woman and mother.

And this is all before high school!

So, when I reflect this morning on why I am shaving my head I have come to two conclusions.

1. It’s my parent’s fault.  We can blame our parents for lots of things.  They get lots of positive credit for this one.  My parents taught me the importance of helping others, for fighting against injustice.  They taught me to take responsibility in our world and help make change. They taught all of us – my sister and brother and me – to live out the Jewish values with which they raised us.

2.  It’s who I am.  My dear friends and colleagues know that I live by the teachings of Rabbi Tarfon.  My parents, my Jewish community, my teachers and mentors have all taught me that I can make a difference in the world.  So, when my friends Rebecca and Liz and Phyllis invited me to participate in#36rabbis Shave for the Brave, I could not sit idly by.

shave for the brave

Today is for the Sommers and all the families who have experienced the loss of a child.

Today is for those in my life who are currently fighting their own battles with cancer.

Today is for all those who have helped me reach – and surpass – my fundraising goal.  (Let’s keep it going!)

My daily meditation these past couple months has been from the lyrics of a traditional gospel song, recently adapted into Hebrew with the verses of Psalm 118:19.  It is with these words on my heart, that I shave my head tonight.

Lord prepare me to be sanctuary Pure and holy, tried and true
And with thanksgiving, I’ll be a living Sanctuary for you.

Pitchu li sha’arei tzedek avo-vam ode Yah

Open the gates of righteousness for me that I may enter them and praise God.

Rabbi Laura Novak Winer serves as the First Vice-President of the Board of the National Association of Temple Educators. This was originally posted on her blog, Rabbi Laura.

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CCAR Convention

Health and Healing, Wholeness and Holiness

In the Torah portion this week, the priests of ancient Israel find that their religious responsibilities include a role as a public health official.  With ritual and commandment, they help individuals confront a particular disease.  Physical health is an important component of spiritual well-being, and the priest has an important role to play in both.  Their goal is to help bring into the world health and healing, wholeness and holiness.

I am not a priest of ancient Israel.  I am not a doctor or a medical researcher.  I can’t cure cancer or heal an ailing child.  But I can raise awareness of pediatric cancer and raise money for research into its cures.  And I will shave my head tonight, along with so many of my rabbinic colleagues, in order to do so.  We stand together in the proud tradition of those seek the spiritual and physical well-being of others.  And our goals are the same as our priestly forbearers:  to bring into the world health and healing, wholeness and holiness.