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April 18, 2014 / 18 Nisan, 5774
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Posts Tagged ‘Tay Sachs’

Free Tay-Sachs Screenings at Philadelphia’s Einstein Center

Thursday, March 28th, 2013

Einstein Medical Center Philadelphia is offering free Tay-Sachs disease screenings to those of Irish descent until the end of May.

The screenings, which involve a simple blood test, are free to those who are at least 18 years old and have at least three grandparents of Irish descent.

Screenings will take place at the following locations and times:

– Thursday (today), 4-6:00 pm at Einstein Medical Center Montgomery, 559 W Germantown Pike, East Norriton;

– Saturday, April 20, 9:30-11 a.m. at the office of Dr. John L. Sabatini, PC at 301 Oxford Valley Road, suite 905A, Yardley, Pa.; and

– Monday, May 13 from 12:30 pm till 2:30 pm at the IrishCenter of Philadelphia (Commodore Barry Club) at 6815 Emlen Street, Mt. Airy, Pa.

Tay-Sachs Disease is a fatal neurodegenerative disease that can be passed on to children when both parents are carriers of an altered gene. Babies born with Tay-Sachs disease appear normal at birth, and symptoms of the disease do not appear until the infants are about four to six months of age when they begin to lose previously attained skills, such as sitting up or rolling over. Children then gradually lose their sight, hearing and swallowing abilities. These children usually die by the age of five.

In the past, Tay-Sachs was often thought of as a Jewish genetic disorder due to its large presence among Ashkenazi Jews. But, cases of Tay-Sachs have been identified in the Irish population in Philadelphia over the last few years, according to the Lansdale Reporter.

Dr. Adele Schneider, director of clinical genetics at Einstein Medical Center Philadelphia, and her team at Einstein are conducting a study to find out just how high the carrier rate is among people of Irish descent. The study, the only one done in the Irish population since DNA testing for the gene mutation has been available, aims to screen 1,000 people, and is funded by the Albert Einstein Society and the National Tay-Sachs & Allied Diseases Association of Delaware Valley.

The Children Of The Chronically Ill And Their Battle For Shidduchim

Wednesday, May 27th, 2009

Dear Ms. Novick,

 

I would like to thank you for your thoughtful column. The information you provide has helped me through the ups and downs of living with a spouse who had MS.

 

There is one issue I have not seen addressed – shidduchim of children whose parent has a chronic illness. My beautiful, intelligent daughter has been unable to get a date because, “your dad has MS.” I guess people take that to mean, “Your home is depressing.”

 

Do you know anyone or any resource to help our children? I am at wits end. Any suggestions would be greatly appreciated.


A Well Spouse


 


 


 


Dear Well Spouse,

 

This is an extremely important issue and I thank you for suggesting it. I am glad my articles have been helpful to you.  I hope, with Hashem’s help, I can assist you in this matter as well.

 

You seemed to have raised two issues here. The first is the supposed detriment of dating and, potentially marrying, a person who has an ill parent. The second is the depression that is assumed to accompany the situation.

 

For many people, dealing with illness is something they will go to any lengths to avoid. And so, if a parent is ill, whether that illness may have a possible genetic correlation or not, is reason enough for some parents and shadchanim to negate a potential match. Yet if we look around us, we all know couples who are suffering from terrible illnesses with no family history of the disease. We also all know many people who have a disability or chronic illness whose children and grandchildren have no such problem.  ”But why take a chance. There are more fish in the sea,” is the response I have heard from many parents who refuse to hear a shidduch with a family who is coping with illness.

 

            Using a microscope to examine the history of a potential spouse has become the norm. Parents of “perfect children” want only “perfect matches” for their children. But which of us truly have flawless children, and how many children really grow in homes where they have never experienced problems?  And is a child who has never had to deal with adversity better prepared for the world a young couple must face than one who has? Have the concepts of bashert and bitachon been totally thrown to the wayside when it comes to marrying off our children?

 

We all wish for our children joyous, anguish-free lives.  But is that really even possible? No one goes through life without facing difficulties – some illness, disagreement or hardships. It is the people who can handle difficulty, who aren’t scared off at the first sign of a problem that handle adversity more easily and efficiently and get their family through it relatively unscathed. And those are often the people with experience. They are often the children of a parent with chronic illness. 

 

We already do genetic testing for Tay-Sachs disease and, I believe nine or 10 other genetic diseases, through Dor Yeshorim. Perhaps it would be a good idea to extend this, if possible, to other diseases that have a known or suspected genetic component upon the request of families dealing with these illnesses. This might give those children of the chronically ill a better chance at dating, and not be eliminated because of what might be in their genes. Further, it will help us remember that not all illnesses have a genetic base.

 

Living in a home with illness can certainly lead to depression. But to assume it does in all cases is ridiculous. Today, depression can be handled successfully in many ways and does not have to be a lifestyle. When other methods fail, antidepressants can help us cope with life’s difficulties.  While I am not advocating their indiscriminate use, they have their place when needed, as does all medication that alleviates symptoms. If there is long term or short term depression in your home resulting from living with illness for many years, medication is definitely something to discuss with your doctor. If your home is depression-free, make sure to ask the references you give to shadchanim to mention that your home is a comfortable, happy place in order to offset the assumption that it is the opposite, even before the question is asked.  This is especially important when people are assuming that depression exists wherever there is chronic illness and may not even ask for verification for what they assume is true.

 

I would be grateful to hear from my readers about their thoughts and/or experiences when it comes to dating a person with an ill parent. My suspicion is that those who have married children of the chronically ill have a lot to teach us and share with shadchanim. I would also like to hear from shadchanim and get their point of view on setting up children like the daughter of the letter writer. 

 

Any shadchan or person wanting to contact the writer of the letter concerning her daughter can do so through me. I will happily forward your ideas.


 


You can reach me at annnovick@hotmail.com

How To Fix Orthodox Jewish Dating

Wednesday, November 5th, 2008

The religious Jewish dating scene is severely broken. In the secular world men and women date by meeting each other at co-ed schools institutions or at events like parties and weekend getaways. They begin to date and the relationship unfolds gradually and organically as they get to know each other better over time.

This is not to say that all things are hunky-dory. There are major problems in this model, like the fact that pretty girls and overtly successful guys are going to get noticed over those with quieter and subtler virtues. Likewise, sex has come to play such a prominent role in secular dating that couples get to know each other physically rather than emotionally, creating distance and a lack of real intimacy in relationships.

But in the religious world, where dating is so often dependent on third parties making introductions, young men and women are at the mercy of others to meet a potential spouse. Those third parties are often professional matchmakers or friends who set them up. There are several flaws in this model:

First, it prevents men and women from meeting directly and creates instead a dependency on those who are not principals in the dating. Second, professional matchmakers often treat their occupations as an impersonal job and take no real interest in their clients. Third, it involves so much work. Since a matchmaker is making an introduction to someone you’ve never met, you have to make the effort of finding out more information about the person in question. Fourth, it all seems highly unnatural, even tiring. Very often these introductions are done arbitrarily and almost randomly. You’re a girl, he’s a guy. You have a pulse, he has a pulse. So a mutual friend thinks, ‘Wow, what a great match!’

What often happens, therefore, in the religious dating world is that it becomes a game of trial and error. Since people are introducing you almost randomly and without a lot of personal information to justify the introduction, you decide to go out anyway on the off-chance that it might work. And even if it doesn’t, at least it will teach you about what you’re not looking for.

But the more you date, the more desensitized you become. Men and women slowly lose their mystery. After a while, you’ve dated so many people that not only do they become a blur, but you’re reduced to using the most superficial criteria to distinguish them.

Because of these flaws in the religious dating mechanism, we’re beginning to see phenomena the Orthodox world expressly preaches against – particularly people dating many potential partners, choosing superficial criteria like looks and money by which to choose a spouse, getting married much later, and consequently having much smaller families just when the Jewish people are hemorrhaging large numbers to assimilation.

And the matchmaking system is getting worse in our time for a number of reasons. First, the Orthodox Jewish community has exploded numerically. With so many men and women looking to get married and so few matchmakers to assist, the system is buckling under the load.

These huge numbers might have been remedied by Internet matchmaking, which has worked well in the mainstream culture. But Orthodox Jews are wary of online dating due to its reliance on superficial items like photographs and because of its casual dating reputation. Also, those who have profiles on Internet dating sites are often treated as though they are desperate.

This issue bothers me greatly, not only because I am raising six daughters, thank God, within the Orthodox Jewish world, but because one of the principal Jewish contributions to the culture is the sanctity of marriage and the strength of family. You would expect these qualities to be most pronounced in the religious Jewish world. But if we don’t address this crisis soon, we will no longer be known for having a superior dating system that leads to blissfully happy couples.

I do not propose to remedy this problem in a single column, but here are some suggestions:
First, the religious Jewish community should immediately set up a matchmaking organization, administered by top professionals, whose purpose it is to gather profiles of nearly every man and woman who wants to get married and to employ leading relationship experts to e-mail one person per week who may be a potential match.

For that to happen, the widespread reluctance to provide personal details to professionals must be overcome by rabbis giving sermons in their various communities encouraging all to participate and send in their details. Yeshiva and seminary heads must sign on if this is to work. If the Orthodox community succeeded in getting nearly every man and woman in yeshiva and seminary to register for Tay-Sachs tests, surely it can get them to register for a potential match. The service would of course be highly confidential.

Second, an aspect of religious education at all seminaries and yeshivas should be one that enables men and women, by the time they reach marriageable age, to focus not only on getting married themselves but on introducing their friends to potential marriage mates. In effect, the religious Jewish educational system should make every young man and woman a matchmaker in training, thereby vastly expanding the matchmaking pool.

Third, the religious Jewish world should provide opportunities for men and women of marriageable age to meet. To be sure, my daughters are raised to be in a single-sex environment up until marriageable age. And even my daughter who has reached that age continues in a religious women’s college with limited exposure to men. And yet, logic would suggest that once they are ready to marry, men and women should be afforded some outlet to meet one another in educational forums such as classes, lectures, or working together on a charitable project.

Rabbi Shmuley Boteach’s daily national radio show on “Oprah and Friends” can now be heard on Sirius 195 as well as XM 156.

Printed from: http://www.jewishpress.com/indepth/opinions/how-to-fix-orthodox-jewish-dating/2008/11/05/

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