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Sorry, it’s not you, it’s your genes!

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Persian Jews are known for many things: their delicious tahdig and kabob, their perfection of the art of taarof, and of course, their magical healing powers of chai ba’ nabat (tea and rock sugar). However, one thing Persian Jews are definitely not known for is their willingness to discuss their medical health history.  

Whether you are shopping in Elat Market, or attending Shabbat services, you are more than likely to run into a friend or relative, and the first thing you ask, after the obligatory cheek kiss, is “How are you? How is your family?” The response is usually “Khodarah shokr” or “Thank G-d, everything is great”. We never really expect them to divulge their personal or family health history. Talking about health related problems is taboo. It is true, the Persian Jewish community is not the only one entrenched in this sense of secrecy, but it has become the sad reality that many individuals are deemed as “unmarriageable” due to a family history or personal history of “genetic” health complications. It is time for the Persian Jewish community to learn more about their genetic health history and dispel the many false ideas that shroud families for a lifetime.

Myth 1:  “A condition that is genetic is hereditary.”

FALSE. As a genetic counselor, I see countless patients who use the words “genetic” and “hereditary” interchangeably. It is the lack of differentiation between these two words that can be a source of confusion for many individuals.  According to Merriam-Webster dictionary, the word genetic is defined as “of, relating to, caused by, or controlled by genes”, while the word hereditary is defined as “passed or able to be passed from parent to child before birth”. Having those definitions in mind, it is important to remember that not all genetic conditions are hereditary. While an individual may have a health condition or genetic syndrome due to a change in their genetic make-up, it does not mean they will pass it down, nor does it mean their other family members may be at risk to pass it down. There are some genetic conditions that are not hereditary. It is very important to differentiate between these two words and use them appropriately when discussing your personal and family health history.

 

Myth 2: “Carriers of a genetic condition are affected.”

FALSE. We all have two copies of every gene, one from our mother and one from our father. When an individual is said to be a carrier of a genetic condition, this means that one copy of their gene is not working properly. This individual is not affected with the condition and will likely not have any symptoms because they still have their other copy of their gene working just fine. In order for an individual to be affected with the condition, both copies of their gene must not work properly. These types of disorders are inherited in what is called an autosomal recessive manner.  Just because an individual is a carrier of a condition it does not mean their children will be affected. It would depend on the carrier status of their partner, and even then it is not a guarantee they will have an affected child together.

 

Myth 3: “Only the Ashkenazi community is at risk to be a carrier for genetic conditions.”

FALSE.  It is a commonly known fact that the members of the Ashkenazi community have a higher chance of being carriers for genetic conditions such as Tay-sachs disease, Gaucher and cystic fibrosis.  Students attending Jewish high schools are often presented with the opportunity to learn about carrier screening and even attend screening events. Since the implementation of carrier screening for Tay-sachs disease in the 1970’s, there has been a 95% reduction in the number of babies born in the US with Tay-sachs.  Similar to the Ashkenazi population, the Sephardic community is also at a higher risk to be carriers for certain genetic conditions.

 

Within the Persian Jewish community, there are five such conditions:

(1) Hereditary inclusion body myopathy (HIBM)- A hereditary muscle disorder with a carrier rate of 1 in 20 Persian Jews.

(2) Wolman disease- The improper breakdown and use of fats and cholesterol in the body with a carrier rate of approximately 1 in 40 Persian Jews.

(3) Congenital hypoaldosteronism-  A salt-losing disorder with a carrier rate of 1 in 30 Persian Jews.

(4) Polyglandular deficiency- A multiple hormone deficiency with a carrier rate of 1 in 50 Persian Jews.

(5) Pseudocholinesterase deficiency- An anesthesia sensitivity disorder with a carrier rate of 1 in 10 Persian Jews.

Even with such high carrier rates within the Persian Jewish community, not many individuals have undergone carrier screening. It is typically recommended that individuals undergo carrier screening prior to marriage or pregnancy. This helps provide at-risk couples with fertility options to help ensure a healthy outcome.  

As part of my Masters thesis through the University of California Irvine, I conducted a survey of the Persian Jewish community to measure their perception of their risk for genetic disorders and to study their attitudes toward carrier testing. Participants were asked to evaluate whether genetic disorder carrier status would harm their relationship with their community or hinder their ability to find a marriage partner. Overall, 61% of participants (n=103) did not believe that genetic carrier status would harm their relationship with their community. However, 86% (n=146) believed that being an unaffected carrier for a genetic disorder would harm their chances of marriage. In fact, their fears were corroborated in a later question; when the participants were asked if they would approve of a family member marrying an individual who is known to be a carrier of a genetic disease, those who were 45 years of age or older were more likely to disapprove of this union.

This age group represents our parents, grandparents, aunts and uncles. There have been many stories of couples breaking up due to disapproval from family members. How many of those couples could have been spared heartbreak if there was proper genetic education in their community? There are many resources available to individuals who want to learn more about their family history and their risk of being a carrier for a genetic condition. Genetic counselors can serve as a source of information and guidance.

 

The Persian Jewish community is one that I am proud to be a part of. Our rich heritage and culture helps us live a life enriched with Torah values and a sense of perseverance.  When it comes to taking charge of our genetic health information, we have a long way to go. It is up to the younger American-born generation to learn about genetics and feel empowered with that knowledge. Use your time around the dinner table to talk freely with your family about their medical history and take charge to help educate those around you. Only together, can we make a difference in our community.

In an effort to help the community and increase awareness, the author, Shira Kohan, will be working with the newly founded organization, Bayit.LA, to provide no-cost consultations for community members with introductory questions and concerns about genetics and how it may impact our lives. Please visit http://www.bayit.la/genetics/ for more information.”

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Shira Kohan received her Masters in Genetic Counseling through the University of California, Irvine where she focused her thesis work on the Persian Jewish community and their risk perception of genetic disorders and attitudes toward genetic testing and screening programs. She is a licensed and certified genetic counselor in the state of California. Her clinics currently focus on preconception, prenatal and cancer genetic counseling.

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IsraAID is launching the Humanitarian Professionals Network (IHPN) in Los Angeles and Bay Area

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 World-renowned Israeli Humanitarian and disaster relief organization expands presence in U.S. by offering Americans training andopportunities for Disaster relief deployment

Los Angeles, CA – On January 10, 2019, in Los Angeles, disaster relief NGO IsraAID will launch its new aid initiative, The IsraAID Humanitarian Professionals Network (IHPN), an elite program that trains doctors, dentists, nurses, engineers and mental health professionals in disaster response and deploys them around the world to helpsave lives.

IHPN members become part of a network of likeminded professionals at the top of theirfields, joining a robust roster of professionals in Israel, and have a chanceto share Israel’s humanitarian ethos with communities in need. Current IsraAID missions span disasters such as the wildfires in California, refugee crises in Greece, Kenya, Bangladesh, violence in Uganda, and cyclones in Vanuatu.

“IsraAID draws on Israeli social innovation and expertise to benefit people in need around the world. We are now leveraging our organization’s unique capabilities to train professionals in the U.S. interested in developing life-saving skills and joining humanitarian relief missions globally, hand in hand with professionals from Israel” said Seth H. Davis, Executive Director of IsraAID U.S. “IHPN will equip skilled individuals in hands-on disaster relief experience and provide enhanced capacity if local disaster were too strike.”

The first event, entitled “What You Need to Know About Humanitarian Aid,” will feature speaker Tim Burke, MA, MPH, who lead IsraAID’s work in South Sudan for five years, where he oversaw programs in public health and post-conflict development. Subsequent speakers include atmospheric physicist Colin Price and refugee crises expert Dr. Nir Boms.

With deployment in 49 countries, and currently active in 19 countries, IsraAID is an expert in training professionals to deploy. In the U.S. alone in the last year, IsraAID has provided humanitarian relief in Florida, Texas, North Carolina, California, and Puerto Rico.

“IsraAID will make Los Angeles more secure by leveraging their unique expertise in disaster response to train professionals in our community,” said [Paul Koretz]. “I look forward to working with IsraAID to help them rollout their IHPN program in California”

Professionals interested in attending should RSVP here  and/or learn more and join the network here.

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About IHPN: The IsraAID HumanitarianProfessionals Network (IHPN) is an exclusive network of professionals at thevanguard of global aid relief activities. Members of IHPN receive expert briefings, emergency-preparedness training, access to enrichment with field leaders,and priority access to deploy on IsraAID missions.

About IsraAID: IsraAID is anon-governmental organization that provides lifesaving emergency relief andlong-term, sustainable solutions for populations affected by natural disasters, epidemics and post-conflict situations. Our teams leverage Israeli innovation,work in full collaboration with local partners, and educate the public and professionals on disaster prevention and relief. IsraAID (US) Global Humanitarian Assistance, Inc. is an independent 501c(3)organization.

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Nothing Matters More Than This

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We live in a world where FOCUS is even MORE important than your INTELLIGENCE.

From our never-ending Facebook feed, to our freshly-updated YouTube subscription page, to our email inbox, we live in an abundant world of information.

However, is it really necessary to consume all of this general information?

Will it ever be useful? Will it ever make any difference in your life?

No. Most likely not.

Learning a little about a lot of different things doesn’t really amount to much.

Instead, you should FOCUS.

Focus on learning and applying ONE skill as intensely and deeply as possible.

Focus is where mastery kicks in.

Kobe Bryant wasn’t the best basketball player that ever played because he was the best all-around person.

Kobe Bryant was world-class because he was absolutely great at ONE thing and one thing only: playing basketball.

So instead of consuming as much general information as you possibly can… instead FOCUS.

FOCUS on one topic. FOCUS on one task. FOCUS on one goal.

Because today, more than ever, focus is way more important than your intelligence.

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New Initiative Launched to Restore Memories and a Legacy

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On Tuesday January 30th, Thirty Years After (30 YA) hosted the Legacy Launch, one of their largest, most innovative and interactive projects to date, at the Ahyra Fine Arts Theater in Beverly Hills.

Sam Yebri, President of Thirty Years After, explains the Legacy Project, “The Project is a grassroots initiative that will help preserve and honor the Iranian  Jewish experience through video for future generations,  and provide an opportunity for every family to capture their parents’  and grandparents’ most compelling memories and anecdotes before it is  too late.”

Doors opened to guest at 7:00 pm where they were greeted with smiles from 30 YA volunteers and staff members. The lobby was packed with guests who were treated to wonderful Iranian street food not often seen or eaten in the United States. The delicious cuisine included Labu (beets baked in their own juice, and typically served steaming hot in a street cart during the dead of winter), Baghali (beans topped with spices, typically served the same way as Labu), Dizi (a meat mash/stew– usually made with lamb, but made with beef and chickpeas at our event), Shohleh Zard (saffron rice pudding), Chos-e-fil (otherwise known as popcorn) and Mahi-Cheh Polo (herbed rice with beef shanks).

The large number of attendees was a testament to the genuine and unprecedented support for the new generation of leaders of the Los Angeles Iranian-American Jewish community.  The printed program for the event listed over 25 generous families and businesses that supported the Legacy Launch and congratulated 30 YA on celebrating their 10 year anniversary.

This event was magical because of the broad range of emotions experienced just by being shoulder to shoulder with grandparents, aunts, uncles and cousins born in Tehran. Sadness is one emotion that could have been felt while standing in the room, because of all of the untold stories that were not recorded, told or heard. How many stories have we “missed out” on because family members have passed away, younger generations have gone off to college, or simply because we took time for granted? At the Legacy Launch, time stood still for a few hours for the sake of a community recording the past, but very aware of time, embracing beloved memories on video, but also progressively moving toward the future.

Yebri explained, “Our history informs our present and powers our future. This is especially true when our families and community have such a rich legacy of inspiring memories and experiences in Iran and during our exodus to America.  30 Years After  is thrilled to launch ‘The Legacy Project’ as part of the organization’s 10th anniversary celebration.”

Bobby Zolekhian, former President of Nessah Young Professionals expressed, “It was one of the most inspirational events I have been to. I am recruiting people to share their stories. This is something extraordinary!”

Featured guest speakers during the screening included Mrs. Susan Azizzadeh, President of the Iranian American Jewish Federation, Dr. Saba Soomekh, Assistant Director of Interreligious and Intercommunity Affairs at AJC, Megan Nemandoust, Margalit Rosenthal, Liora Simozar and 30 YA President, Sam Yebri.

The dynamic presentation of the screening and its intimate interviews clearly validated that the second and third generations of Iranian Jews growing up in the United States are confidently embracing their unspoken responsibility to record the stories of generations before them for a purpose with a greater cause– maintaining their identity, culture, and traditions.

Learn more about preserving your legacy with 30 YA at https://legacy.30yearsafter.org/

 

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december, 2019

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