Project Shui for Tay-Sachs

Jacob Sheep Sensation

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Contents
*Video or Pictures of Tay-Sachs

Project Shui Home Page

   *
Welcome From Shui
   How Close are we to a Cure?
   *Rachaeli's Friends
   Sign up for Updates
*Bar Mitzvah Video Invite
What is Project Shui?

  
Thank You From Shui
   Internet Ads&Marketing

What is Shavuot?
  
Shavuot & Shui's Sister

What is Tay-Sachs?
  
Tay-Sachs Diagnosis:

      Part I

      Part II

   Genetics Made Fun
      *Lysosomes The Movie
      *Genetics 101 Video
     
Narrated by Alec Baldwin
   Genetics 101 Article

*Inspirational Videos

  
*Beautiful Faces of Lysosomal

  
*Tay-Sachs Talk
   *Connor Hopf Cure Tay-Sachs
   *2010 Faces of Tay-Sachs
  
*My Soul Sister-Molly Grace
  
*Our Star Dakota
   *Rachaeli's Song of Love
   *Elise-A Child Living with Tay-Sachs
   *Last Laugh
   *Meet Gavin

Tay-Sachs in the Media
   *
Glee Sectionals
   *Grey's Anatomy Sweet Surrender
   *Law & Order SVU MERCY
   *
21 Below Documentary
Legal & Financial Issues

   What is Wrongful Life?
   Right to Live in the United Kingdom
   How to Pay Medical Bills?
   Social Security Disability
   CHIPRA-Insurance for Kids
   Medicaid Waiver Programs
   Katie Beckett Medicaid
   Who is Katie Beckett?
 
 Why We Need Katie Beckett Waiver?

  
Eligibility for Katie Beckett
   Katie Beckett in Georgia
  
Katie Beckett's Going Home
   (from People Magazine 1981)

Treatment or Cure
  
Canavan Pioneers
   *Gene Therapy
   Jacob Sheep Sensation
   Article in Forward-Jacob Sheep
   *Stem Cell Transplants
   Enzyme Replacement
   Substrate Inhibitors
   Should I Try Zavesca?
   Letter for Insurance 
      Approval for Zavesca
   Chaperone Therapy

In-Home Medical Care
  
Home Health Care
   Respiratory/Secretions
   Coping Strategies
  
Coping with Humor w/ Shui's Dad
Rachaeli's Story
  
Shocked by Tay-Sachs Article
The Project Shui Family
  
Mommy's Online Journal
   Abba's Online Journal
   Shui's Fun Pages

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On this page:
Jacob Sheep Part I:  The Odd Connection
                                              
Jacob Sheep Part II: Outsmarting Lavan
                                               
Jacob Sheep Part III




Jacob Sheep Part 1:  Coincidence or not?
from Rachaeli's online journal,
www.caringbridge.org/visit/rachaeli,
April 17, 2010
The Odd Connection Between Sheep and Tay-Sachs Disease
  
by Hanna Bandes Geshelin                                                                                                                          
Copied from the The Harry Hoffman Fund Website:
http://theharryhoffmanfund.com/tay-sach-research.php


What’s the relationship between a Catholic couple with a small Texas acreage, strange spotted sheep named after a biblical story, the administrative assistant of the Rabbinic Association of Greater Dallas (RAGD), and a bunch of east-coast scientists–and why should you care? We are all bound up together in the effort to find a treatment and cure for Tay-Sachs.

A week after I began working as administrat ive assistant of RAGD, I got a strange message about sheep, a farmer outside of Dallas, and Tay-Sachs disease. The Jewish Federation couldn’t help this man, the operator said; perhaps the Rabbinic Association could? The Rabbinic Association could do nothing. But as an Orthodox Jew I’m familiar with the story of Jacob and the spotted sheep, as a hand spinner I am interested in sheep and wool, and when I was young I had friends who lost three children to Tay-Sachs. Did I say I’m also a writer? I decided to investigate.

Fred Horak I called the farmer, Fred Horak, whose St. Jude’s Farm is named after the patron saint of lost causes. The Horaks raise Jacob Sheep, a nearly extinct breed of unique spotted sheep. He told me that the sheep might hold the treatment and cure to Tay-Sachs disease, but $3000 was needed to transport the sheep to researchers in Massachusetts. As I verified his story, I learned the following:

Ten years ago a couple of the Horaks’ lambs began to totter and lose their mobility. Then the lambs died. When their veterinarian was mystified, the Horaks, who wanted to get rid of the carriers of this disease, brought the problem to vets at the veterinary medicine school at Texas A & M University (TAMU).

Instead of helping the Horaks identify carriers, a researcher convinced them to breed for this strange disease so that TAMU researchers would have more animals to study.  They began breeding the sheep that they thought might be carriers, as well as raising healthy sheep. Soon the Horaks had about 60 sheep, of which one-third were in the disease-carrying pool. Although the Horaks continued to maintain the carrier sheep at considerable expense, researchers at TAMU seemed to forget about the sheep.

Years went by without anyone from TAMU contacting the Horaks. Finally the Horaks decided to butcher some of these sheep; they couldn’t afford to keep them forever. Then, late last winter Dr. Brian Porter of TAMU called the Horaks saying that TAMU researchers had identified the problem. In June 2008 he went out to the farm, drew blood from all the sheep, and sent it to researchers in New York City who were interested in the problem. Soon the researchers sent back the results: there were eight carriers- six ewes and two rams. The problem was Tay-Sachs Disease. Tay-Sachs has been identified in other animals, most curiously in penguins and flamingos in a few American zoos. But these animals’ genetic make-up is only remotely related to that of humans. These unusual sheep are very similar to humans in the way that matters most for unraveling the mystery of Tay-Sachs disease.

Researchers in the Tay-Sachs Gene Therapy Consortium have put together a plan to use the sheep to find a treatment and cure for the disease. When the Horaks contacted me a few months ago, their problem was money to transport the sheep from Texas to New Jacob SheepEngland, where the research will be carried out. By now the transport fees are covered. However, this initiative, which holds out an excellent chance of finding a treatment and cure for this 100% fatal disease, needs to raise considerably more money. Doctors estimate that between the cost of raising the sheep, maintaining the sheep, and the research itself, they will need $500,000-$1 million. The researchers have already found cures for similar lysosomal storage diseases. They are confident that these sheep hold the key to a cure for Tay-Sachs.

The research plan has come just in time. Some of the ewes are old and have never been bred. Whether they will be able to breed is questionable. One of the rams has never successfully impregnated a ewe. The gene pool is shrinking. This year could be the last year to begin breeding the trait successfully.

To me, everything about this story has been amazing. If you believe in coincidence, that things happen randomly and occasionally fortuitously, then this saga shows an amazing series of coincidences. If you don’t believe in coincidence, then the whole ten-year saga of the Jacob Sheep shows evidence of divine providence.

Now it is our turn to play a role, and in spite of difficult financial times we need to open our wallets and support this effort. There is no time to lose.

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Mom's Addendum:

Mom sat next to Fred Horak at the research session of the NTSAD Conference.  What a special man!  He becomes tearful with each Tay-Sachs story he hears.  He told mom he has healthy kids and grandchildren and that he couldn't imagine what it would be like to experience our journey.  He has donated so much to our cause; it is not cheap to raise sick sheep.

Of the many miracles that are happening all around us, is the miracle that the old ram WAS able to impregnate the ewes.  It's a funny story but I'll skip it for now.  We were hoping for ONE affected lamb to do a trial of gene therapy on, but FOUR were born earlier this year!!  Why is this huge?  Well, one of the researchers at the conference said that if they get positive results with gene therapy in about THREE Tay-Sachs sheep, they could possibly get the approval for Human Trials.  Mommy cries every time she hears those words.  

We found another article about the Horaks that I'll link:

http://www.albc-usa.org/Newsletter/newsletterJanFeb2009.html


Mom thinks it's really cool that documentation throughout history of this type of sheep indicates that they may have originated in what is now Syria some 3,000 years ago.  According to the Jacob Sheep Breeders Association website, pictoral evidence traces the movement of these sheep from Syria, through North Africa, Sicily, Spain and on to England.  They then came to North America with the Europeans.

One of the many romantic stories about the Jacob Sheep is that they are direct decendants of the flock of sheep acquired by Jacob during the time he worked for his father-in-Law, Lavan, as it is written in the Book of Genesis.

This is the segue to Jacob Sheep Part II.

Love,
Rachaeli

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Jacob Sheep Part II: 
from Rachaeli's online journal, www.caringbridge.org/visit/rachaeli, April 18, 2010

Jacob Outsmarts Lavan by "Creating" Spotted Sheep

Shortly after I saved the last entry, Dakota's mom wrote in my guestbook that on Friday night, the Tay-Sachs sheep were transported from their home in Texas to Auburn University. They arrived safely on Saturday morning.  Now we pray that the sheep do as well as the cats have been doing.
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Mommy wanted to review the story of Jacob and how he acquired the spotted sheep and goats from his deceitful and malicious father-in-law, Lavan. 

Jacob was married to Leah and Rachel, Lavan's daughters.  Lavan had been deceitful from the start when he had Jacob work for him for 7 years so that he could marry Rachel.  On the wedding night, he switched Leah for Rachel so that the older daughter would marry first.  Lavan then, a week later, allowed Jacob to marry Rachel with the agreement that he would work another 7 years for him.  After the 14 years, he asked to leave; he had not been paid more than his and his family's meals during this time.  Lavan asked him to stay and said, "Specify your wage," hoping or expecting Jacob to stay on as before, with no pay.

Instead , Jacob made an offer.  He told Lavan to remove every speckled or spotted lamb and every brownish lamb from among the sheep, and the spotted or speckled ones from among the goats.  From then on, every speckled/spotted/brownish lamb born and every spotted/speckled goat born would be his wage.  Lavan would keep the desired animals, which in Syria at the time were white sheep and black goats.

It was then that genetics made its debut in the Torah (Old Testament), and apparently, it wasn't Lavan who discovered it.  Prior to this, our genetics knowledge base included: "boys and girls are made differently" - from Adam and Eve, to preserve different species, the animals had to come onto the ark "two by two" - from Noah,  and the fraternal twin births of Esau and Jacob.  Genetic engineering was not yet the rave.  

Was Jacob the first person or shepherd to realize that ebony and ivory sometimes makes beige in humans, and spots or speckles in sheep and goats?  Probably not.  But this is the first time in the Torah that this level of genetic knowledge is revealed.  The significance of this information in my personal life will be revealed in Jacob Sheep III

So, after a year (he ended up staying another 6 years in total after this deal was struck), Jacob began genetic engineering.  It is not perfectly clear to me how his technique worked, but my mom and I know nothing about the mating rituals of sheep and goats.  We assume that a shepherd of at least 15 years would have known more. 

From Mommy's reading and re-reading, it seems like Jacob was trying to fire up the animals, particularly the females, as soon as each mating season began; I'll get to his strange technique later.  He first tried to get the newly spotted/speckled/brown flocks to mate; these were the ones that were born that first year and so were now his property.  Then he tried to get spotted/speckled/brown flocks to mate with the solid colored flocks.  He also separated out the early-bearing (stronger)flocks from the late-bearing (weaker) flocks so that the late-bearing ones went to Lavan. 

How did he stimulate the animals?  He apparently took rods from poplar, hazel and chesnut trees and peeled white streaks into them.  Then he set up the peeled rods in the water receptacles to which the flocks came to drink so that they would be facing the rods.  This apparently stimulated them to mate.  Perhaps the brown and white stripes on the rods were a visual cue to enhance the desire to mate with a spotted or speckled animal, instead of a solid colored one.  Who knows?  I have yet to find a commentary explaining how and why these rods stimulated the flocks to mate.  If anyone wants to provide an explanation, please send us a note in our guestbook.

[Note:  After this was written, Mom found some commentary about this.  Apparently, it was the belief at the time that, if a female thought about certain characteristics or qualities in an individual shortly before or during conception of a child, that child would have those particular characteristics.  Extrapolated out to animals - if the female animal were to "think about" multi-colored offspring (because she was looking at the striped rods), she might be more inclined to mate with a speckled male so she could have speckled off spring.  It was mentioned elsewhere that Jacob might have done this striped-rod approach for show (maybe because it went along with the beliefs of the day), but that he had a thorough understanding of heredity and Mendelian genetics - that he understood white sheep and black goats were dominant and how to most efficiently manipulate breeding to maximize the number of spotted offspring.]

He also placed the lambs in front of the flocks, because the sight of the young lambs could act on procreating animals. He also apparently exposed the rods to the strongest ewes to help ensure the birth of vigorous lambs.

Even with these techniques, the rapid growth of his flocks was nothing short of miraculous. He is said to have left with 600,000 animals.

Abba was looking through this portion of the Torah and he thought that the description of these symbolic aphrodiasiacal rods seemed like the white streaks he peeled were like rings around the rod.  When Abba was visualizing this, he realized that the description was like that of DNA.  When analyzing DNA, you are comparing the different "stripes" on the DNA "rod" to see if there are any deletions, insertions or mutations.  Hmmmmm.

And that's how Jacob got his spotted sheep.

Are these the ancestors of our current Jacob Sheep here in America.
Who knows? 

But won't it make a great story if these Jacob Sheep, the possible descendants of the genetically engineered flocks belonging to our Jewish Forefather, the father of the 12 tribes, would be the vehicle for the cure of the most dreaded Jewish genetic disease? 

It's already a great story.

Love,
Rachaeli

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Jacob Sheep Part III
 

Jacob Sheep Part III has not yet been written up in Rachaeli's journal.
The abridged version is:  Rachaeli was diagnosed with the most dreaded Jewish genetic disease on the week of Parshas Vayeitzei.  This portion of the Torah tells the story of Jacob, Lavan, and the spotted sheep.  It is the first mention in the Torah of the concepts genetics and genetic manipulation, and has been dubbed 'the Genetics Parsha' by medical folks.  And now, some 3,000 years later, a breed of sheep called Jacob sheep, rumored to have descended from Jacob's flock, holds the cure for Tay-Sachs disease.

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