
New York, NY (May 2013) Jacob’s Cure, a non-profit foundation created to find a cure for Canavan disease, a rare fatal genetic brain disorder,announces its “Dream Big” Gala on May 16th, 2013, hosted by Sherri Shepherd, co-host of The View. The event will honor brothers and long-time supporters, Brian Sklar of financial firm BTIGandScott Sklar of Morgan Stanley.
Sherri Shepherd takes the hosting reigns from 2012’s Kathy Lee Gifford and Hoda Kotb, and is sure to bring her signature warmth and humor to the festivities to honor the Sklars. Brian Sklar and Scott Sklar have been supporters of Jacob’s Cure since first learning of founder Jordana Holovach’s son Jacob, who is afflicted with Canavan disease. With their support, they helped her organize the first fundraiser in 2000, which raised $80,000 and ignited the fight for the cure. The galas have grown bigger and more influential ever since, with the 2012 event raising over $600,000, and the 2010 event raising $1.5 million.
Over 800 influential New Yorkers in the fields of finance, real estate, fashion, entertainment and sports will gather together on May 16 at Pier Sixty for a night filled with cocktails, dinner and entertainment. Celebrity guests will include Donny Deutsch, Constantine Maroulis, Jessica White, Jonathan Cheban, Julie Henderson, Katie Lee, Lewis Licari, Matt White, Miss New York USA, Robyn Lawley, Ryan Cabrera, Jeremy Roenick and Shantel VanSanten. The event will honor the Sklar brothers’ hard work, while continuing to raise funds necessary for lifesaving research into treatments and cures for Canavan disease.
The continued success and growth of the gala and the scope of the charity’s work is a testament to Jacob’s Cure’s supporters, who have never stopped “dreaming big” in the fight for a cure. On May 28th Jordana Holovach will travel to Washington DC to solicit the support of the National Institutes of Health in the fight against Canavan disease, for which she has already raised over $10 million.
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About Jacob’s Cure:
Jacob’s Cure is a 501c3 non-profit foundation dedicated to raising the funds necessary to cure Canavan disease, a fatal genetic brain disorder that affects children at birth. Because of an enzyme deficiency, an acid in the brain accumulates to dangerous levels causing catastrophic effects to the normal formation of myelin (white matter) in the brain that is responsible for transmitting nerve impulses from one part of the body to another. It is the lack of white matter that leaves Canavan children incapable of performing the simplest functions. Even if they live to their full life expectancy – 3 to 10 years – they become blind, paralyzed, prone to seizures…and increasingly lost to the world around them.
Since its inception in September 2000, Jacob’s Cure proudly allocates monies raised to research in gene-therapy, stem cell transplantation, pharmacological approaches and basic science in understanding the disease. With over the $10,000,000 raised thus far, our efforts to date have resulted in successful gene-therapy trials and pharmaceutical interventions that have, in most cases, stopped the progression of this quickly deteriorating disorder in Canavan children worldwide. In fact, some of our groundbreaking work has led to trials for more commonly known disorders such as Parkinson’s, MS and ALS. Our goal is now the cure. In collaboration with several research labs and the biotech industry, our efforts and funding is moving research towards an exciting stem cell clinical trial for Canavan children worldwide.

Rye, NY – November 18, 2011– Last month, at the annual Jacob’s Cure Family Bowl event to strike out Canavan disease, Jacob’s Cure presented their 2011 Young Leadership Award to thirteen-year-old Purchase resident, Joseph Lovinger. Over the past year, Joseph raised more than $2,000 for Jacob’s Cure through the sale of hand-made duct tape wallets.
Joseph has been friends with Jacob Sontag, the namesake of Jacob’s Cure, for more than seven years. “When I met Jacob in first grade at Purchase Elementary, I knew right away there was something special about him. As I grew older, I began to appreciate his fighting spirit and perseverance. I wanted to help his cause, but I never knew how I could do so,” said Joseph.
Jacob is afflicted with a rare genetic brain disease called Canavan disease. Children with Canavan become trapped in their bodies, develop seizures, lose their ability to see and swallow, and if untreated, die in the first decade of life. The research funded by Jacob's Cure has slowed or halted the progression of the disease in most of the children who received gene therapy and have begun the recommended pharmacological treatments. Jacob will be celebrating his 16th birthday in February.
The wallet project came into existence almost by accident. Joseph had always wanted to find a way to help Jacob’s Cure, but he never knew how. One afternoon, Joseph and his friend Dean were looking for something to do when they stumbled across a YouTube video demonstrating how to make origami wallets. After attempting to sell the wallets in school, they realized paper wallets were not marketable, so they decided to try duct tape. The new wallets, available in customized colors and designs, were such a hit with their friends that the two boys went into business together and created their company, JDWallets.
Even Joseph’s father, Daniel Lovinger started using one of the duct tape wallets, expressing an admiration for the simplicity of the design. One day, when he took the wallet out of his pocket to pay for a purchase at Candy Rox in Rye, the owner stopped him and asked him where he had purchased it. Lovinger told the store owner all about his son, Joseph, and soon enough, a partnership was formed. It was Joseph’s idea that the money raised from the Candy Rox sales go to benefit Jacob’s Cure.
The Jacob’s Cure Young Leadership Award is presented to a young person who goes above and beyond in their commitment to the fight against Canavan disease. It recognizes the values of leadership, integrity, and compassion, all of which Joseph embodies. The decision for Joseph to be this year’s recipient was unanimous. “I felt honored and also very proud that I had achieved such a great thing for Jacob,” he said after receiving the award.
Joseph’s parents are proud and supportive of their son’s efforts. “The work Joseph does on behalf of Jacob's Cure is his way of recognizing the bravery of a friend in as enduring a way as possible. He truly loves doing all he does for Jacob's Cure," said Joseph’s mom, Linda.
You can purchase the wallets in a variety of colors and designs at Candy Rox in Rye or on the Jacob’s Cure website at http://jacobscure.org/wallet.php. Visit Jacob’s Cure on facebook (http://www.facebook.com/jacobscure) or Twitter (http://www.twitter.com/jacobscure) for more information on Canavan disease and how you can join the fight.

Rye, NY – May 16, 2011 – Jacob’s Cure is proud to announce that Dr. Vladimir Markov of UMDNJ-SOM will be the first recipient of the Starker Fellowship for White Matter disease. Dr. Markov is studying the effects of anapleurotic therapy on white matter development and cognitive motor skills in the Nur7 mouse model of Canavan disease.
Jacob’s Cure is a non-profit organization founded by Jordana Holovach in 2000 to save her son, Jacob, who was diagnosed with Canavan Disease at six months old. Children with Canavan become trapped in their bodies, develop seizures, lose their ability to see and swallow and die during the first decade of life if untreated. However, the research funded by Jacob's Cure has slowed or halted the progression of the disease in most of the children who received gene therapy or started the recommended treatments.
The Starker Fellowship, named for long-time Jacob’s Cure board members, Farrel and Steven Starker, was created in 2010 when the organization honored The Starkers at the inaugural Jacob’s Cure “Dream Big” Gala, which acknowledged their 10 years of devotion to the fight against Canavan disease and the more than two million dollars they have jointly raised towards the cure. To that end, as Founder of BTIG, an institutional brokerage firm, Mr. Starker has spent the last several years rallying the philanthropic spirit of the Wall Street community through BTIG’s annual Commissions for Charity Day. Jacob’s Cure is one of many children’s charities that receive sizeable donations from this effort. This year alone, Jacob’s Cure proudly received $75,000. Mrs. Starker’s efforts have focused on developing unique ways of raising donations and awareness for Jacob’s Cure’s through fundraising events. In addition, Mrs. Starker single-handedly launched the Jacob’s Cure Kids Committee, which encourages children to get involved while instilling the importance of giving back.
The Starker Fellowship aims to fund young investigators working in the areas of white matter or neurodegenerative disease research. Although the mission of Jacob’s Cure is to fund research into treatments for Canavan disease, Jacob’s Cure recognizes the importance of collaboration and the effects that advancement in one disease can have on other related disorders. For example, the Canavan disease gene therapy trial funded by Jacob’s Cure led to a similar trial for Batten disease, and Jacob’s Cure’s lead researcher, Dr. Paola Leone, served as an advisor to the Batten disease trial.
The Starker Fellowship was created to further the idea of collaboration among researchers working on related neurological disorders. As part of the requirements for the fellowship, Dr. Markov will be required to attend the Jacob’s Cure Canavan Research Summit and Family Conference in June, which unites the researchers from around the world who are on the forefront of studying brain diseases like Canavan.
The objective of Dr. Markov’s project is to define whether a nutritional supplement (anapleurotic therapy) can improve brain development and psychomotor function in a mouse of model of Canavan Disease. Unlike other therapeutic approaches which have a relatively long lead time, anapleurotic therapy may represent the shortest route to a disease modifying clinical therapy for Canavan disease. This study will generate safety and efficacy data to support the development of a Phase I study to test anapleurotic therapy in patients affected by Canavan Disease.
“We are thrilled to award the first Starker Fellowship to Dr. Markov. Understanding more about white matter neurological diseases will bring us closer to finding a cure for all of these devastating illnesses, including Canavan disease,” said Jacob’s Cure Founder & Director, Jordana Holovach. “Dr. Markov’s work is highly relevant to the mission of the fellowship and offers a novel approach to treating Canavan disease.”
One of the members of the scoring committee added, “[Dr. Markov’s project] addresses a long-standing question of pathophysiology that must be answered.”
The fellowship is currently funded for the first two year cycle. Additional donations to continue this important work can be made at http://www.jacobscure.org/donate.php

New York – April 27, 2011 – BTIG LLC, a global financial services firm specializing in institutional trading and related brokerage services, will hold its 2011 Commissions for Charity Day next week, on Wednesday, April 27.
BTIG’s Annual Commissions for Charity Day has raised more than $15 million from equity, fixed income and derivative trading commission profits over the last eight years to support various nonprofit organizations. This year’s annual celebrity-filled event will support several organizations that deal with important issues facing children, including:
· A Little Hope - www.alittlehope.org
· All Stars Helping Kids - www.allstarshelpingkids.org
· Autism Speaks - www.autismspeaks.org
· Deafness Research Foundation - www.drf.org
· Harlem Children’s Zone - www.hcz.org
· Hedge Fund Cares - www.hedgefundscare.org
· Jacobs Cure - www.jacobscure.org
· Michael J. Fox Foundation for Parkinson's Research - www.michaeljfox.org
· Project Sunshine - www.projectsunshine.org
· Smile Train - www.smiletrain.org
· St. Jude Children’s Research Hospital - www.stjude.org
· St. Mary’s Healthcare System for Children - www.stmaryskids.org
· Starlight Children’s Foundation - www.Starlight-newyork.org
Celebrities who will be attending this year’s Commissions for Charity Day in BTIG’s New York office in support of the event and their charitable foundations include: Kevin Connolly and Emmanuelle Chriqui of “Entourage,” Michael J. Fox, Matt Dillon, Brooklyn Decker, Tori Praver, Darryl Strawberry, Nick Swisher, Eli Manning, Steve Schirripa, Sean Avery, John McEnroe, Joe Girardi, Justin Tuck, Johan Santana, Tom Coughlin, Bode Miller, Reggie Jackson, Joe Namath, Mark Messier, and NYSE Euronext CEO Duncan Niederauer. In addition, Ronnie Lott, Joe Morgan, and Tony Gonzalez will be in BTIG’s San Francisco office, and Marcus Allen in the Los Angeles office.
This is the first year BTIG will be holding Commissions for Charity Day internationally in its offices in Hong Kong, Singapore, Sydney and London.
About BTIG
BTIG LLC is a premier institutional brokerage and fund services company. BTIG continues to build its global franchise around a broad and experienced group of professionals who are leaders and experts in their respective fields. Founded in 2002, BTIG, including through its affiliates, employs more than 400 professionalsin five different countries. BTIG serves customers from all over the world and offers services in 11 areas: Equity Trading, Fixed Income, Futures Trading, Convertible Securities, Equity Derivatives, Prime Brokerage, Outsource Trading, Direct Market Access, Capital Markets, Equity Research and Corporate Access. BTIG has ten domestic offices: New York, San Francisco, Dallas, Boston, Chicago, Los Angeles, Greenwich, Red Bank, Norwalk and Orinda. The firm also has four overseas affiliates: London, Hong Kong, Singapore and Sydney.
BTIG LLC is a member of FINRA and SIPC
BTIG Australia Limited ACN 128 554 601 is a member of ASIC and ASX
BTIG Hong Kong Limited, Exchange Participant of SEHK, licensed and regulated by the SFC
BTIG Ltd is a member of the LSE and is authorized and regulated by the FSA
BTIG Singapore Pte. Ltd is registered and licensed with MAS
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MEDIA CONTACTS:
Caroline Harrisat 212.279.3115, ext 222, charris@cjpcom.com
Kelsea Michaelat 212.279.3115, ext. 231, kmichael@cjpcom.com
Peter Tarrant at 212.593.7560, ptarrant@btig.com

Washington, D.C., April 3, 2011 – Today Matthew Shiffman and Samantha Bichler will be participating in the 2011 Credit Union Cherry Blossom 10-Mile Race in honor of a very special cause. The couple is using the race to raise money for Jacob’s Cure and the fight against Canavan disease, a rare genetic brain disease that affects children. Children will Canavan disease become trapped in their bodies, develop seizures, lose their ability to see and swallow and die in the first decade of life.
For Matt, this cause is extremely personal. His sister Rebekah (Becky) was born on April 25, 1986 and three years later, she was diagnosed with Canavan disease. At the time, Matt’s family was told she had less than a year to live. Nearly 22 years later, Becky is alive, happy and one of the oldest survivors ever diagnosed with Canavan. Canavan has taken away all of her physical abilities, but has not broken her heart or her soul. Those who know Becky report that she has a perpetual sparkle, infectious laughter, and smile that can brighten a room. “It is her spirit, determination, toughness, and infinite love that has undoubtedly helped shape who I am today,” says Schiffman.
Because Canavan disease is so rare, public funding has been scarce. According to Jacob’s Cure Founder & Director, Jordana Holovach, “It will be through the help of friends and family that Canavan children may one day be cured.” Jacob’s Cure is currently working towards funding a stem cell clinical trial for Canavan children worldwide which is expected to start in the next two years.
So far, Matthew and Samatha have raised over $20,000 for the fight against Canavan disease. For more information or to make a donation, please visit http://www.jacobscure.org/mattandsam.

Personal Stories Offer Inspiration for Parents, Important Business Insights for Drug Marketers
CHICAGO – Feb. 22, 2011 – Siren Interactive, a relationship marketing agency specializing in rare diseases, announces the publication of "Uncommon Challenges; Shared Journeys,"a collection of 13 personal stories offering intimate views into the lives of families affected by rare disorders. The narratives reveal how parents -- mothers in particular -- play critical roles in obtaining a correct diagnosis and appropriate treatment for children with rare diseases. The stories also show how caregivers in the rare disease community seek and use information differently from other groups and have many unmet needs for education and support.
Wendy White, president of Siren Interactive and herself the mother of a child with a rare disorder, compiled the anthology, leading with her own family's story. Dr. Timothy Coté, director of the FDA's Office of Orphan Products Development, says the book "strikes straight to the heart of the matter" by focusing on patients and their families.
"Academics talk molecules, industry talks revenues, government talks regulations, but parents’ words of their heartbreaking love for their children with rare diseases are the truest words of all," he says. "I recommend this book to anyone who wants to understand the power that’s driving the orphan drug movement."
Rare disorders, also called orphan diseases, are defined as conditions that affect fewer than 200,000 people in the U.S. Despite the seemingly low number, such disorders affect one in 10 Americans, 80 percent of them children. The category includes cystic fibrosis, hemophilia, muscular dystrophy and all childhood cancers, as well as numerous diseases with lesser-known names. Rare diseases are often difficult to diagnose, and approximately 70 percent of treatment therapies are prescribed off-label.
White believes the pharmaceutical industry can provide significant educational services to parents of children with rare disorders, but must realize that conventional ways of building relationships are ineffective with this group.
"This community is dominated by mothers who are fighting for their children's lives, in an environment offering scarce information and resources. They are unusually driven, and the Internet has made them unusually empowered. They are avid researchers who become experts in their children's diseases. They are critical analysts and ardent advocates who explore all treatments and fight for their children's right to access them. Pharma marketers must re-think how they approach this community and explore new ways of meeting their needs."
"Uncommon Challenges; Shared Journeys" is available through Amazon.com for $16.00 per copy or through Siren Interactive for bulk orders. All profits will be distributed among the rare disease groups represented in the book. In recognition of Rare Disease Day, an annual observance that falls on the last day of February, Siren Interactive will provide complimentary copies of the anthology to each of the company's business partners.
A pdf or hard copy of the book is available to media on request.
About Siren Interactive
Siren Interactive is a relationship marketing agency focused on understanding the behaviors of patients and physicians dealing with chronic rare diseases. Because of this expertise, the agency can drive new patient starts and life-long adherence to therapies for its clients. For more information about the company or "Uncommon Challenges; Shared Journeys," visit www.sireninteractive.com.
(NB: Jacob's Cure Founder & Director Jordana Holovach is a contributing author.)

Rye, NY, January 3, 2011 – This year, residents of Harrison, Rye and the surrounding areas are making a different kind of New Year’s resolution. They’re resolving to do good in 2011 by voting every day during the month of January to help Jacob’s Cure, a local charity, win a $250,000 grant from the Pepsi Refresh contest to fund lifesaving research for children with Canavan disease.
Jacob’s Cure is a non-profit organization founded by Jordana Holovach in 2000 to save her son, Jacob, who was diagnosed with Canavan Disease at six months old. Children with Canavan become trapped in their bodies, develop seizures, lose their ability to see and swallow and die by the first decade of life if untreated. However, the research funded by Jacob's Cure has slowed or halted the progression of the disease in most of the children who received gene therapy or started the recommended treatments.
“Fourteen years ago, when Jacob was born, I was told to take him home and make him comfortable. We were not offered any hope. Now, Jacob’s Cure is able to offer hope to newly diagnosed families in the form of research and treatments we are funding. Winning this grant from Pepsi will help us continue to advance this lifesaving work,” said Jacob’s Cure Founder and Director, Jordana Holovach.
In addition to funding research, a small portion of the grant will go to fund the upcoming Canavan Disease Research Summit & Family Conference, to be held in Harrison, which will unite leading researchers as well as many of the Canavan families from around the world. This type of meeting has never occurred before, and the families are very excited to be able to meet and share their experiences with others who know what they are going through. Since the cost of care for a Canavan child can be tremendous, many families are relying on Jacob’s Cure winning the grant in order to attend the conference.
Businesses, schools and community groups across the Westchester area are banding together to help this local group win and gain national visibility. In addition, Jacob’s Cure is encouraging young voters with a $2,500 scholarship which will go to the person under age 21 who gets the most people to sign up for the daily eblast reminding supporters to vote. The scholarship is contingent on Jacob’s Cure winning the $250,000 grant.
Said Ms. Holovach, “We are thrilled with the outpouring of support we have seen from our friends and community members. The kids at all the local schools are encouraging their friends to support Jacob’s Cure through text, email and Facebook. It’s wonderful to see these young people, many of whom know Jacob personally, really understanding the importance of charity and giving back. It is touching to see them working so hard on behalf of my son.”
Every person can vote for Jacob’s Cure 3x per day from January 3rd through 31st. Please visit http://www.refresheverything.com/jacobscureto vote with your email and Facebook account, and text 105628 to 73774 (PEPSI) to vote by phone. Visit http://www.jacobscure.org/voteto sign up for daily email reminders and for the most up-to-date voting information and direct links!
About Jacob’s Cure
Jacob’s Cure is a 501c3 non-profit foundation dedicated to raising the funds necessary to cure Canavan disease, a fatal genetic brain disorder that affects children at birth. Because of an enzyme deficiency, an acid in the brain accumulates to dangerous levels causing catastrophic effects to the normal formation of myelin (white matter) in the brain that is responsible for transmitting nerve impulses from one part of the body to another. It is the lack of white matter that leaves Canavan children incapable of performing the simplest functions. Even if they live to their full life expectancy – 3 to 10 years untreated – they become blind, paralyzed, prone to seizures, and increasingly lost to the world around them.
Since its inception in September 2000, Jacob’s Cure proudly allocates monies raised to research in gene-therapy, stem cell transplantation, pharmacological approaches and basic science in understanding the disease. Our efforts to date have resulted in successful gene-therapy trials and pharmaceutical interventions that have, in most cases, stopped the progression of this quickly deteriorating disorder in Canavan children worldwide. In fact, some of our groundbreaking work has led to trials for more commonly known disorders such as Parkinson’s, MS and ALS. Our goal is now the cure. In collaboration with several research labs and the biotech industry, our efforts and funding is moving research towards an exciting stem cell clinical trial for Canavan children worldwide. http://www.jacobscure.org/
Press Contact: Sarah Goshman 1.914.502.4249 ext 2/ sarah@jacobscure.org

Rye, NY, September 16, 2010 – Jacob’s Cure, a non-profit foundation created to find a cure for Canavan disease, a fatal genetic brain disorder that affects children, announced today that it will begin offering a fellowship in honor of long-time board members, Farrel & Steven Starker, to support new investigators working in the field of clinical research for white matter or neurodegenerative disease. The award will consist of $49,500 per year for two years.
The goal of the fellowship is to help bring research from the lab to the patients. The reviewers will be looking for researchers working on novel treatments that have the potential to have a positive impact one or more brain diseases in the near future.
“Since our inception ten years ago, Jacob’s Cure has funded novel treatments that have improved the lives and life expectancies of Canavan children. We are proud that this work has spilled over to benefit other diseases, and we would like to continue to foster this collaborative environment by supporting research we can all learn from and utilize. The Starker Fellowship gives us the opportunity to move novel science forward toward potential cures for diseases of the brain,” said Founder and Director, Jordana Holovach.
Initial funds for the Starker Fellowship were raised at the Jacob’s Cure Inaugural “Dream Big” Gala in May, 2010 which was held at Pier Sixty, Chelsea Piers and raised 1.5 million dollars. Further information regarding the fellowship is available at www.jacobscure.org/fellowship
Media Enquiries
Sarah Goshman at +1.914.502.4249 ext 2, sarah@jacobscure.org
About Jacob’s Cure
Jacob’s Cure is a 501c3 non-profit foundation dedicated to raising the funds necessary to cure Canavan disease, a fatal genetic brain disorder that affects children at birth. Because of an enzyme deficiency, an acid in the brain accumulates to dangerous levels causing catastrophic effects to the normal formation of myelin (white matter) in the brain that is responsible for transmitting nerve impulses from one part of the body to another. It is the lack of white matter that leaves Canavan children incapable of performing the simplest functions. Even if they live to their full life expectancy – 3 to 10 years untreated – they become blind, paralyzed, prone to seizures, and increasingly lost to the world around them.
Since its inception in September 2000, Jacob’s Cure proudly allocates monies raised to research in gene-therapy, stem cell transplantation, pharmacological approaches and basic science in understanding the disease. Our efforts to date have resulted in successful gene-therapy trials and pharmaceutical interventions that have, in most cases, stopped the progression of this quickly deteriorating disorder in Canavan children worldwide. In fact, some of our groundbreaking work has led to trials for more commonly known disorders such as Parkinson’s, MS and ALS. Our goal is now the cure. In collaboration with several research labs and the biotech industry, our efforts and funding is moving research towards an exciting stem cell clinical trial for Canavan children worldwide. http://www.jacobscure.org/

Thursday Event to Honor BTIG CEO for Work off the Trading Desk
New York, May 20 2010- Jacobs’s Cure, a non-profit foundation created to find a cure for Canavan, a fatal genetic brain disease, today announced it plans to host a DREAM BIG gala to honor long-time board members, Farrel and Steven Starker, CEO of BTIG LLC, and to raise the funds necessary to find a lifesaving treatment for Canavan children around the world.
The gala will be held on May 20, 2010, at Pier Sixty, Chelsea Piers, in New York City and will be attended by more than 750 influential New Yorkers in the fields of finance, real estate, fashion and sports. The event will be hosted by Donny Deutsch, TV personality and Chairman of Deutsch Inc. and guests such as Eli Manning, Gavin Degraw and Vanessa Williams.
The Starker family joined the Jacob’s Cure board in September 2000 when Jordana Holovach launched the foundation. Since then they have raised more than two million dollars for the fight against Canavan disease.
“Farrel and Steven have worked tirelessly to support Jacob’s Cure over the last 10 years,” said Holovach. “With federal funding for research in Canavan disease limited, particularly as a result of the economic crisis, it is the work of individuals like the Starkers that makes the difference between funding this lifesaving research and not.” With a nod to Wall Street, Jacob’s Cure attributes its advancement in research to the generosity Steven has rallied from his colleagues all year, but particularly during BTIG’s Commissions for Charity Day where Jacob’s Cure is amongst many children’s charities that receive sizeable donations.
Canavan disease affects children at birth. The disease robs children of any milestones so they are essentially trapped in their bodies; they cannot sit, crawl, walk or say a single word. They develop seizures, lose their eyesight and ability to swallow, and become too compromised to fight off illness. The disease is usually fatal within the first decade of the child’s life.
Funds raised from the gala will support a phase 1 clinical stem cell trial for 20 Canavan children. This cutting edge research is the result of a partnership Jacob’s Cure initiated with Geron Corporation, who is providing the stem cells. While not the norm for a biotech company to have an interest in a rare disease, Geron jumped on the opportunity to work with the Canavan researchers led by Dr. Paola Leone (UMDNJ) because they are established leaders in the field of clinical research and Canavan has proven to be an excellent model for bigger white matter diseases such as Parkinson’s and MS. “We are proud to collaborate with Dr. Paola Leone and the Canavan research team on developing a stem cell based treatment for Canavan disease, and we are especially grateful for Jacob’s Cure’s support of the research” explains Ed Wirth, M.D., Ph.D. Medical Director of Regenerative Medicine for Geron Corporation.
Jacob’s Cure was founded to promote awareness and raise funds for scientific research in Canavan disease. The disease is considered rare by governmental standards and therefore federal funding for research remains scarce.
For further information on the DREAM BIG gala or to purchase tickets please visit www.jacobscure.org.
Media Enquiries
Kelsea Michael at +1.212.279.3115, ext. 231, kmichael@cjpcom.com
Jill Greenwood at +1.212.279.3115, ext.252, jgreenwood@cjpcom.com
About Jacob’s Cure
Jacob’s Cure is a 501c3 non-profit foundation dedicated to raising the funds necessary to cure Canavan disease, a fatal genetic brain disorder that affects children at birth. Because of an enzyme deficiency, an acid in the brain accumulates to dangerous levels causing catastrophic effects to the normal formation of myelin (white matter) in the brain that is responsible for transmitting nerve impulses from one part of the body to another. It is the lack of white matter that leaves Canavan children incapable of performing the simplest functions. Even if they live to their full life expectancy – 3 to 10 years – they become blind, paralyzed, prone to seizures…and increasingly lost to the world around them.
Since its inception in September 2000, Jacob’s Cure proudly allocates monies raised to research in gene-therapy, stem cell transplantation, pharmacological approaches and basic science in understanding the disease. Our efforts to date have resulted in successful gene-therapy trials and pharmaceutical interventions that have, in most cases, stopped the progression of this quickly deteriorating disorder in Canavan children worldwide. In fact, some of our groundbreaking work has led to trials for more commonly known disorders such as Parkinson’s, MS and ALS.Our goal is now the cure. In collaboration with several research labs and the biotech industry, our efforts and funding is moving research towards an exciting stem cell clinical trial for Canavan children worldwide.

Jacob's Cure is thrilled to be participating in BTIG's 8th Commissions for Charity Day on Thursday, May 6th 2010. The success of the day is 100% drive by how much business institutional accounts choose to do with BTIG on that day. Please support Jacob's Cure and all the other important causes we stand beside that day by sending your orders to BTIG.
What is unique about this day and BTIG?
BTIG now has 400+ employees with 1,500 active institutional accounts. This makes BTIG the perfect facility to provide the institutional community a great conduit to give back to a large group of important charities. With a leading position in trading volume on a daily basis vs. our peers, this Charity Day is a great one to support from the client's perspective.
For more information about Jacob's Cure, please visit our website at www.jacobscure.org,
call us at 914.502.4249 or email sarah@jacobscure.org

ADVISORY, April 9, 2010 (GLOBE NEWSWIRE) --
What:
Jacob's Cure will visit the NASDAQ MarketSite in New York City's Times Square.
In honor of the occasion, Jordana Holovach, Founder of Jacob's Cure, will preside over the NASDAQ Opening Bell.
Where:
NASDAQ MarketSite – 4 Times Square – 43rd & Broadway – Broadcast Studio
When:
Friday, April 9th, 2010 at 9:15 a.m. to 9:30 a.m. ET
Contacts:
Jill Greenwood
(212) 279-3115 ext. 252
(203) 913-6298
jgreenwood@cjpcom.com
NASDAQ:
Robert Madden
(646) 441-5045
Robert.Madden@NASDAQOMX.com
Feed Information:
The Opening Bell is available from 9:20 a.m. to 9:35 a.m. on Galaxy 19 C/15, downlink frequency 4000 vertical. The feed can also be found on Ascent fiber 1623. If you have any questions, please contact Robert Madden at (646) 441-5045.
Radio Feed:
An audio transmission of the Opening Bell is also available from 9:20 a.m. to 9:35 a.m. on uplink IA6 C band / transponder 24, downlink frequency 4180 horizontal. The feed can be found on Ascent fiber 1623 as well.
Facebook and Twitter:
For multimedia features such as exclusive content, photo postings, status updates and video of bell ceremonies please visit our Facebook page at:
http://www.facebook.com/pages/
Webcast:
Photos:
About Jacob's Cure:
Jacob's Cure is a non-profit organization founded by Jordana Holovach to save her son, Jacob, who was diagnosed with Canavan Disease at six months old. Children with Canavan become trapped in their bodies, develop seizures, lose their ability to see and swallow, and die in the first decade of life. The research funded by Jacob's Cure has slowed or halted the progression of the disease in most of the children who received gene-therapy and have begun the recommended pharmacological regimen. While there is currently no cure for Canavan Disease, Jacob's Cure is funding a stem cell trial that aims to further treat and ultimately cure Canavan disease. This stem cell research may very well revolutionize the manner in which "white matter" neurological diseases, such as Parkinson's, MS and ALS, are treated and will be a model for their cure.
About NASDAQ OMX:
(http://www.facebook.com/
NDAQA
Source:The NASDAQ OMX Group, Inc.
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Small Disease takes New York City by storm with the release of its 30-second TV spot on TAXI TV. If you caught it, you will no doubt remember it. If you missed it, here it is.
25 million people suffer from a rare disease... Canavan is one of those diseases. This how the spot begins; you are immediately captivated and wonder, "Am I a carrier?"
Jacob's Cure - A Fight Against Canavan Disease, is the foundation who created the spot. "It is thrilling to have this outreach opportunity," says Jordana Holovach, Director of Jacob's Cure. "We are reaching 1.3 million people who would have never heard about Canavan disease and might want to support us in our fight for the cure and consider testing for carrier status."
As a result of Taxi TV, WABC - Channel 7 has offered to air the spot as a PSA as well starting immediately.
For More Information
Please Visit www.jacobscure.org
Contact: Jordana Holovach (914) 673-2796






