CJG Blog

Center for Jewish Genetics blog

The ObG Project – A New Resource for Women’s Healthcare Professionals

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The ObG Project – A New Resource for Women’s Healthcare Professionals

Susan J. Gross, MD, FRCSC, FACOG, FACMG, a long-time friend and supporter of the Sarnoff Center for Jewish Genetics has recently launched the ObG Project, a primary educational and social resource for women’s healthcare professionals.  Through the use of mobile friendly platforms, the ObG project will provide knowledge and information that is

  • Evidenced based and oriented to professional standards and guidelines
  • Easily searchable
  • Practical and action oriented – “what you need when you need it”
  • Engaging and impactful for providers, both inside and outside the office

Dr.Gross and her management team have a depth of combined experience in women’s healthcare, computer technologies, medical writing and decades of real life experience managing and caring for women and their families.  They have served as teachers and mentors, and are passionate believers in life-long learning. 

For all of you who know Sue and have admired her work in women’s healthcare and genetics, check out the website at www.ObGproject.com  Join in the conversation and contribute your knowledge to improve healthcare services for women worldwide.

Top Ten Latke Tips For Your Hanukkah Feast!

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Top 10 Latke Tips For Your Hanukkah Feast!

1.     What kind of potato? The starchier the potato, the crispier the latke. Makes sense. And the starchiest potato out there is the unassuming russet. They’re usually pretty cheap too, which means more latkes!

2.     Hand grate or food processor? I like to hand grate my latkes. Because that’s how my Bubbe did it and if it’s good enough for Bubbe it’s good enough for me. Maybe it’s the blood, sweat and arm power you have to put into hand grated latkes, but they just taste better that way.

3.     Save the starch! Shred your potatoes into cold water to prevent browning. Then wait about 10 minutes, ​set aside a sieve over a bowl ​and drain the water​ into the new bowl leaving the potatoes in the sieve. Press out excess water from the potatoes. Let the starch in the reserved water settle, then carefully drain the water, reserving the milky white stuff on the bottom. That’s the starch! Add it back to your dried potatoes for extra crispiness. When making sweet potato latkes, I add cornstarch to the water to up the starchiness and crispiness.

4.     Dry baby, dry! After you take the potatoes out of the water, remove as much moisture as possible using towels. Again, less moisture means crispier latkes, which means better latkes. Are you seeing the pattern here?

5.     Seasonings. Feel free to get creative with your latkes! Add cumin, cayenne, za’atar, cinnamon and don’t forget the salt. What about toppings? Sour cream and applesauce are delish, but how about a horseradish cream, or guacamole for a change?

6.     Fry, baby, fry! Use an oil with a high smoke point to achieve perfectly golden latkes. I prefer grapeseed or canola oil. How do you know if it’s hot? If you test a bit of the latke batter in the oil, it will sizzle but not brown immediately. Check oil periodically while frying to make sure it doesn’t get too hot or cool.

7.     Three’s a crowd. Don’t crowd the pan! Too many latkes cool down the oil, making soggy latkes. Let the edges of the latkes get nice and brown before flipping so they won’t stick. And resist the urge to use a nonstick pan: you want the potatoes to caramelize to get that nice golden color.

8.     Salt! Fried food tastes good with salt. It’s just science. Blot latkes on paper towels and drain on a draining rack. Salt latkes immediately after you take them off the fryer.

9.     Having a crowd? Set the oven to 250 degrees F to keep latkes warm while you are cooking the others. But don’t let the batter sit too long or it will brown. 

10.  Make ahead. You can do this! Fry per usual, and then freeze them on a cookie sheet and pack in a freezer safe resealable bag. When ready to serve, let latkes thaw slightly and reheat in a 450 degree F oven.

Amy Kritzer is a food writer and recipe developer in Austin, Texas. She blogs at What Jews Wanna Eat. She is also an online columnist for the Jewish Week.  These tips are excerpts from her blog post on 12/14/14.  http://www.jwfoodandwine.com/latkes-top-10-tips

President Obama Signs 21st Century Cures Bill

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President Obama Signs 21st Century Cures Bill

On Tuesday, December 13, 2016 the president signed the 21st Century Cures Act into law, after more than a year of bipartisan negotiations.

“It’s wonderful to see how well Democrats and Republicans in the closing days of this Congress came together around a common cause,” Obama said at the signing ceremony, surrounded by members of Congress of both parties. “I think it indicates the power of this issue and how deeply it touches every family across America.”[1]

 A section of this bill provides new money for the National Institutes of Health and additional funds for the FDA including provisions for speeding up the approval of new drugs. The mental health portion draws on the years of work of Rep. Tim Murphy (R-Pa).  The parties put aside their differences to pass this legislation to establish a new assistant secretary for mental health in the Department of Health and Human Services as well as a chief medical officer. Murphy argues that these positions will bring more accountability and medical knowledge to the Substance Abuse and Mental Health Services Administration, an agency he has criticized as ineffective.[2]  The bill also authorizes grants for areas such as suicide prevention and seeks to improve the enforcement of “parity” rules that require insurance companies to cover mental health services to the same degree that they cover physical health services. Sens. Chris Murphy (D-Conn) and Bill Cassidy (R-La) worked on those sections and others in the mental health portion of the bill.

The Sarnoff Center will be following the fate of ObamaCare in Congress in 2017 and how possible changes in the legislation may affect healthcare for the general population and especially those with rare diseases.

 


[1] Sullivan, Peter, TheHill.com/policy/healthcare/310223-obama-signs-medical-cures-bill-into-law, 12/13/16

[2] Ibid.

Carrier Screening is about Ethnicity, not Religion

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CARRIER SCREENING IS ABOUT ETHNICITY, NOT RELIGION

By: Aishwarya Arjunan and Alyssa Cohen

Remember those family trees you did back in third grade? Yours was probably very different than the tree of the kid who sat next to you; in fact, it was probably completely unique. America is a “melting pot” of different cultures and ethnicities and each of us has a very different background. These cultural differences mean more than celebrating different holidays or having different family recipes, they could mean a difference in genetic predispositions.

We all carry changes in our genes that can lead to disease. Many ethnic groups have “their own” genetic disorders—disorders that are not unique to the group, but are found to be more common in individuals from that particular ethnic background. Because America is this “melting pot” and we all have a unique background, it is important that we are all aware of both our family history and our family health history.

If starting a family is in your future, consider learning more about your ethnicity and family health history. Speak with a doctor or genetic counselor about the disorders that are more common among individuals with your background and about counseling and screening options available to you. Carrier screening is designed for healthy individuals who have no symptoms of a disease, but are known to be at a high risk because of family health history or ethnicity and it might be the right option for you.

Feel free to contact the Norton & Elaine Sarnoff Center for Jewish Genetics with questions about carrier screening regardless of ethnicity. Our genetic counselor will be more than happy to answer your questions and direct you to the appropriate specialist.

The following are examples of genetic conditions that are seen more commonly in various ethnic groups.

African Americans: Hemoglobinopathies*, glucose-6-phosphate deficiency, cystic fibrosis

Ashkenazi Jewish: Gaucher disease type I, cystic fibrosis, Tay-Sachs disease, familial dysautonomia, and Canavan disease, are a few of the conditions seen more frequently in individuals with Ashkenazi Jewish descent. Click here for the full list of 19 conditions. Need to be screened for these conditions? Register today for the Center's Genetic Education and Screening program. 

Asian (including Southeast Asian and Chinese): Hemoglobinopathies

French Canadian: Tay-Sachs disease, tyrosinemia

Hispanic Caribbean: Hemoglobinopathies

Hispanic Mexican/Central American: hemoglobinopathies, cystic fibrosis

Indian (Asian subcontinent): hemoglobinopathies

Irish/English/Welsh: Neural tube defects, cystic fibrosis

Mediterranean (Southern European Caucasian): Cystic fibrosis, hemoglobinopathies, glucose-6-phosphate deficiency,

Middle Eastern: Phenylketonuria (Turkish), hemoglobinopathies

Northern European Caucasian: Cystic fibrosis, phenylketonuria, alpha-1-antitrypsin deficiency, hereditary hemochromatosis

Sephardic Jewish: Familial Mediterranean fever, glucose-6-phosphate deficiency, glycogen storage disease, hemoglobinopathies, Wolman Disease

*disorders of hemoglobin include sickle cell disease and thalassemia

 

Have questions about carrier screening? Or even just, have questions? Ask us or one of the other featured experts at Genes In life!

An Interfaith Love Story from the 1700's

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AN INTERFAITH LOVE STORY FROM THE 1700's

By: Susie Fields

In the spring of 2006, my husband and I were entering the world of parenthood. Like so many first-timers, we were overly conscientious.  We investigated the proper neo-natal diet, neo-natal vitamins, considered moving into a larger home, bought a sensible car, and looked into genetic testing.  We spoke to our OB/GYN at a large downtown practice and decided we were not candidates for genetic testing.  After all, only one of us was Jewish.  My husband is 100% Ashkenazi Jewish and I am 100% not Jewish, or so we thought.  

In fact, my husband, Steve, found novelty in sharing the details of my American family lineage with new acquaintances. It dates back hundreds of years but falls a handful of generations short of the Mayflower.  As my family legend sings, the first of my American grandparents were part of the Huguenot immigration out of France, a Protestant group fleeing religious persecution. Regardless of which family line we traced, my North American roots are solidly planted on all sides by the late 1700s.  We even have family celebrities participating prominently in both the Revolutionary and Civil Wars.  I am the embodiment of colonial immigration, believing my DNA was a mix of French, Germanic, and English ancestry.

Steve’s ancestry included its own family legends. Two Jewish brothers risking their lives to escape Russian pogroms. They entered the cold waters of a Black Sea port, swimming towards two different ships which ferried them to adventures on two separate continents, never meeting again. The story continues with one of the brothers entering the United States, and having a son who eventually changed his surname from Finglefield to Field.  (My children thank that ancestor regularly in their prayers.)

So there I was, 16 weeks pregnant for the first time.  As is customary, I had diligently made successive appointments with each of the doctors in the large practice.  On this day, I was meeting with Doctor 3.  She casually walked into the room, introduced herself, noted my age, and verbally wondered why I hadn’t undergone a number of neo-natal and genetic tests.  (I should mention, I was almost 37 years old.) I explained that my husband and I were comfortable with all of the results of the “extra” ultra-sounds.  The chances of medical issues were minimal. And…after all…I was not Jewish.

The next few words Doctor 3 bluntly stated not only made me laugh out-loud but also caused a flurry of activity. “Well, Mrs. Field, as long you are neither Creole nor French Canadian.” I was dumbstruck. My mother is 50% French Canadian.  I guess, that makes me at least 25% French Canadian. What did that mean? Was that enough to call myself French Canadian?

Without going into a deep dive of French Canadian history, I will sum it up for you with a few key facts.  The British Army’s entrance into Canada in the mid-1700s resulted in the immigration of Ashkenazi Jewish soldiers, especially to an area outside of Quebec. And frankly, love knows no bounds.  In fact, one of the first and most prominent Jews in the British Army, Samuel Jacobs, had several children with two French Canadian women.*

A few more important facts: Everyone regardless of ethnicity is at risk to be carriers for different genetic conditions. Although Tay-Sachs disease is commonly associated with the Jewish community, individuals with French Canadian, Cajun, and Irish ancestry are also at a higher risk to be carriers for Tay-Sachs. No condition is exclusive to a particular community which is why genetic counseling and carrier screening is important for all individuals and couples that are beginning the family planning process.  

Let’s go back to 2006; I was sitting on the examination table, staring, bewildered, at Doctor 3.  She followed up, “Why don’t we give your husband a quick call and have him come in for genetic testing.  Regardless of what you decide to do with the results, it’s better to know if you are carriers of genetic diseases.” I couldn’t argue with that. (For more information on what it means to be a carrier of a genetic disease, please see the Center’s website: https://www.jewishgenetics.org/FAQ).

Because I was 16 weeks along, the in-house genetic testing team had Steve’s blood drawn within an hour.  We headed home that afternoon, where Steve gleefully called my mother to say, “Hi, Barb, I want to formally welcome you to the tribe!”

Luckily for us, our results indicated that Steve was not a carrier for any of the major diseases tested. Steve and I have two fabulous, rambunctious children.  As recommended, we completed a new round of genetic testing with each pregnancy. Since the field of genetics continues to evolve, it is important to check in with your health care provider to check for updated recommendations.

Although, our families were always supportive of our interfaith marriage, I am reminded that we did not break new ground.  Interfaith relationships have always been a part of human history.  As a result, carrier screening is important for all couples, whether both partners are fully Ashkenazi Jewish or neither are fully Ashkenazi Jewish, because ethnicity can be complicated. Learning about our DNA is a path that leads many of us to meet ancestry we never knew existed.

Bibliography:

Anderson, Mark. The battle for the fourteenth colony: America's war of liberation in Canada, 1774-1776. Hanover, New Hampshire: University Press of New England, 2013

Greer, Alan. Peasant, Lord, and Merchant: Rural Society in Three Quebec Parishes 1740-1840 (Social History of Canada, 39) Paperback – October 1, 1985. Toronto, Canada: University of Toronto Press, 1985.

InterfaithFamily is the premier resource supporting interfaith couples exploring Jewish life and inclusive Jewish communities. We offer educational content; connections to welcoming organizations, professionals and programs; resources and trainings for organizations, clergy and other program providers; and our InterfaithFamily/Your Community initiative, providing coordinated comprehensive offerings in local communities, including Atlanta, Boston, Chicago, Los Angeles, Philadelphia, the San Francisco Bay Area, and Washington, DC with a pilot affiliate program in Cleveland.


21st Century Cures Act Passes both Houses!

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21st Century Cures Act Passes both Houses!

On December 1, 2016 the House of Representatives passed the 21st Century Cures Act 392 – 26) and on December 7 this legislation passed through the Senate (94 – 5). With an overwhelming majority in favor in both houses of Congress the bill is now headed to President Obama who has pledged to sign it into law as soon as it reaches his desk.  This updated version of the 21st Century Cures Act includes:

  • $4.8 billion in new funding for the National Institutes of Health (NIH)$500 million in new funding for the Food and Drug Administration (FDA)
  • Formally establishes the Precision Medicine and Cancer Moonshot initiatives
  • Reauthorization of the Rare Pediatric Disease Priority Review Voucher program through 2020
  • Funding for the establishment of a national neurological disease surveillance system coordinated by the Centers for Disease Control and Prevention (CDC)
  • Improved biomarker qualification
  • Allowances for the FDA to recruit and retain additional specialized employees
  • Strengthened patient engagement at the FDA through the Patient Focused Impact Assessment Act
  • A regenerative medicine designation to allow such products to qualify for priority review and accelerated approval
  • Provisions to foster programs to improve mental health and deter substance abuse

Funding for the NIH and FDA will be appropriated at the discretion of Congress via an “innovation fund” mechanism.  These provisions and additional funding would boost our nation’s research capacity and help modernize the drug review and approval process at the FDA.

Senator Lamar Alexander, R – Tenn., who leads the committee involved in writing the bill, called the measure on Monday a “Christmas miracle” that would “help us take advantage of the breathtaking advances in biomedical research and bring those innovations to doctors’ offices and patients’ medicine cabinets around the country.”[1]

Unfortunately, the updated legislation left out one of the key bipartisan provisions that would have brought needed treatments for the 30 million Americans with a rare disease.  The Orphan Products Extensions Now, Accelerating Cures and Treatments (OPEN ACT; HR 971/S 1421) has been endorsed by 173 national patient organizations and was included in the House-passed version of the 21st Century Cures Act, but was dropped from the new bill.  The OPEN ACT would provide an incentive for companies to repurpose existing drugs for rare disease indications, which is substantially faster and more cost-efficient than traditional drug development. This legislation is critical to accelerating the drug development process and helping ensure the translation of new research into life-saving treatments for patients. The updated draft of 21st Century Cures is a missed opportunity to save and substantially improve the lives of patients with rare diseases.[2]



[1]Andrew Siddons, CQ Roll Call, December 7, 2016

[2] Faster Track Newsletter, December 2016, EveryLife Foundation for Rare Diseases, info@EveryLifeFoundation.org

     

Baby1

We are proud to announce that our Carrier Screening Program is open with our new medical provider Insight Medical Genetics (IMG). Visit our Get Screened page to learn more about our program and how to register!

CJG-Whats-In-Your-Genes

Do You Know What's In Your Genes?

What is the most valuable gift you can give to your family? The gift of good health! There are many health conditions that run in families. Knowing your family health history can alert you to the potential risk for a variety of genetic disorders . Be sure to check with your relatives for warning signs and assess your risk for hereditary cancers!

Did you know: Ashkenazi Jews are 10 TIMES more likely to have BRCA mutations, which significantly increases lifetime risks for hereditary cancers, so what does this heightened risk mean for you? Click here to learn more !