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Shop Saks Greenwich to Support Jacob's CureSaks Fifth Avenue has designated Jacob’s Cure to receive 5% of purchases made with a Saks credit card by our supporters in February 2012.

 

If you have shopping to do, please go to Saks in Greenwich and choose Jacob’s Cure as the beneficiary of your purchases. You can make your designation at the register when you check out and it will apply to all of your purchases for the entire month of February.

 

So get out there, shop Saks and support Jacob’s Cure!

 

If you don’t currently have a Saks credit card, please see any sales associate to open up an account and start shopping to benefit a great cause!

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Enzyme Replacement Therapy for Canavan Disease

Dr. Reuben Matalon and Dr. Ronald Viola

Jacob’s Cure and the Canavan Research Foundation have recently teamed up to co-fund a new project exploring the application of Enzyme Replacement Therapy for Canavan Disease. The research project is being led by Dr. Reuben Matalon of the University of Texas Medical Branch and Dr. Ronald Viola of the University of Toledo.

Dr. Matalon was responsible for the initial identification of aspartoacylase as the enzyme defect in Canavan disease and the subsequent production of an animal model of this disease that is used to examine the effects of experimental treatments. Dr. Viola has determined the structure of aspartoacylase and elucidated the mechanism by which this enzyme carries out the metabolism of NAA. These researchers have combined their expertise to devise new therapies for the treatment of Canavan disease.

Their objective for this project is to produce modified forms of aspartoacylase that can be used in human enzyme replacement therapy trials for Canavan disease. The rationale for this approach is that replacement of the defective enzyme with a stable, non-immunogenic and active form of aspartoacylase can overcome the genetic defect and potentially prevent further deterioration of brain function. If successful, it is their expectation that administering ERT before the appearance of symptoms may produce a treatment for Canavan disease and, under the most favorable of circumstances, may actually allow reversal of some developmental defects.

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Katy Perry, Julie Bowen, Sting…

October 11, 2011

The Jacob’s Cure bowling event to strike out Canavan disease is quickly approaching, and we have some incredible packages available in our silent auction. Some highlights include: A Hollywood package including set tours of Modern Family and Cougar Town, VIP tickets to “The Talk”, salon services at Joseph Martin, one night in a deluxe room [...]

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Help Us Strike Out Canavan Disease!

September 28, 2011

Dear Friends, This is just a note to thank you for your patience with our postponement of the bowling event from our original date in April. As many of you know, Jacob suffered a severe complication from a routine neurological procedure. The complication led to a brain clot which was relieved by emergency surgery and [...]

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The 2011 Canavan Research Summit & Family Conference Video

September 9, 2011

Our Jacob’s Cure Canavan Research Summit & Family Conference, held on June 3-5, 2011 brought together researchers and families. The researchers were able to learn from and be inspired by the families, and the families were given hope after learning of new treatments on the horizon.  Jacob’s Cure would like to say a big thank [...]

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Two Unique Cases of Canavan Disease

August 29, 2011

Did you know that the severity of Canavan disease can vary from child to child? For example, one of our kids, Lily, has a very mild form of the disease. You would never know from looking at her that she is anything but perfectly healthy, and if it wasn’t for her seizures, she might never [...]

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2011 Canavan Research Summit Synopsis

July 5, 2011

By Dr. Paola Leone This year marked the second Canavan Research Summit, where 40 of the world’s top scientists gathered to share data addressing Canavan disease pathology, diagnosis and potential treatments. The 2011 Canavan Research Summit was chaired by Paola Leone, PhD, and Darryl De Vivo, MD and took place in Harrison, New York on [...]

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Our Beautiful Children

June 10, 2011

This past weekend Jacob’s Cure had the distinct honor of hosting our 2nd Jacob’s Cure Canavan Research Summit and our 1st Canavan Family Conference. As most know, Jacob’s Cure began 10 years ago as the result of a neighborhood letter writing campaign with the sole mission of raising money for research aimed at a cure. [...]

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Caring for Jacob: A Mother’s Day Story

May 9, 2011

By Jordana Holovach This piece was originally printed in the Jewish Weekly, May 15, 2006.  Jacob turned 15 this past February. Mothers will be showered with adoration this weekend, from breakfast in bed to dinners they did not cook. Flowers will be plentiful and children will do something extra special to show their moms how [...]

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Canavan Family Spotlight – May, 2011 – Pity? We Don’t Have Time For That

May 4, 2011

(This month’s Canavan family blog is written by Peggy, mom to Amber Rose, Dylan, Ariel and Kaydi.)   It makes me sad that people look at my girls and say things like, “So awful,” or, “Such a pity.” I’ve also gotten, “How tragic,” and let’s not forget, “What a shame.” Really? I understand how it [...]

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