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Dr. David Malkin, of The Hospital for SickKids in Toronto, began the afternoon session introducing Marlo Gottfurcht Longstreet, of the Tanner Project, and their sponsorship of Dr. Varda Rotter. Dr. Malkin shared with the audience a video made by Marlo’s daughter, Casey Longstreet, who shared her thoughts of carrying the mutant p53 gene and the importance of her website: www.genomegeneration.com.

Dr. Rotter took the stage and discussed the basics of the mutant p53 and the research, she and Dr. Moshe Oren, are doing with the mutant gene: Peptide Base Therapy. “It was a wonderful conference,” says Marlo Gottfurcht Longstreet. “It is reassuring to know the dedication and research that is going into Li-Fraumeni Syndrome.” Marlo was excited to hear about future therapies that can help people with the mutant p53 gene. “The work being done by Dr. Varda Rotter gives us hope. Her research with Peptide Base Therapy and its potential use as a preventative measure gives people like Casey, and others, hope to continue to stay healthy. I am so proud the Tanner Project was able to sponsor Dr. Rotter at the event and support the work she continues to do.”

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Casey Longstreet, Co-Founder of the Tanner Project Foundation, has launched her website: www.genomegeneration.com.

“Genome Generation is the first step in my generation’s journey to be proactive, to live the longest and healthiest life possible and to know one’s family history,” says Casey. “I hope my website encourages conversation among my peers to be as proactive as they can be when it comes to their health. The older generation is afraid to know…my generation is different, they want to know. It’s time to know,” shares Casey.

The website features information, news, an interactive family tree, an “Ask Casey” section, hats for sale, as well as, Casey’s blog. “I love posting on my blog.  I talk about everything…from school to dance to my weekend in Coachella. It’s not just about my health…it’s about me being a typical teenager,” says Casey.

Check out www.genomegeneration.com.

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The grant, awarded to the Tanner Project Foundation, will help support the Tanner Project at the J. Craig Venter Institute for their N-of-1 Study.

On June 7, 2015, at a brunch hosted at Kehillat Israel, Marlo Gottfurcht Longstreet was presented with the grant.  “We appreciate the opportunity to use the grant funds to continue our N-of-1 project at JCVI as we investigate new assays, such as ctDNA, that will help move our project forward," said Marlo.

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After an introduction from Dr. Craig Venter, the Tanner Project Foundation video was showed to the ballroom filled with several hundred guests. After the 14-minute video, Marlo took the stage and shared her story.

Marlo spoke about her son Tanner, who died at the age of 11, of a Glioblastoma Brain Tumor and who also was a carrier of the mutant p53 gene. She emphasized the importance of knowing your family history and having your genes sequenced. Marlo explained that it is scary to get you and your family tested but "the unknown is scarier." Marlo shared with the audience that they can take steps to monitor their family and get information that can make a difference. "Knowledge is power. Let that knowledge empower you," said Marlo.

Marlo also discussed the Tanner Project's relationship with the J. Craig Venter Institute. Under the direction of Dr. Nicholas Schork, the Tanner Project at JCVI consists of an N-of-1 Study of an individual who is predisposed to hereditary disease.

Marlo finished her speech to a standing ovation. "I am continued to be humbled by the enthusiasm and support that I receive when I speak," says Marlo. "If sharing our story...Tanner's story...helps even one person, then I did my job."

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Addressing the audience was both an honor for Marlo and an opportunity to help support the organization that has been so instrumental in the development of the Tanner Project. “The invitation to speak at the gala meant so much to me,” Marlo explained. “It was a chance to not only tell our son Tanner’s story, but to recognize the incredible impact JCVI has had on genomics and our mission of monitoring very early stage cancer.”

Sharing the emotional details of the 11-year-old Tanner’s fight against a Giloblastoma Brain Tumor—likely the result of a mutation in the TP53 gene—helped shine a personal light on the groundbreaking research at JCVI. This understanding helped catalyze Marlo’s mission and Tanner’s legacy, ultimately leading to the “N of 1” project, led by JCVI scientist Nicholas Schork, Ph.D.

Turning Tanner’s tragic passing into a movement that helps others identify a heightened cancer risk is the goal that propels Marlo and the Tanner Project. It was a message that resonated with the audience and one likely to have a lasting impact.

“I was so moved by the outpouring of support and genuine caring from the audience,” Marlo notes. “I met so many wonderful, caring people who wanted to help—it was something I will never forget.”

For more information about the gala, visit the JCVI blog by clicking here.

Tanner Project Foundation was founded after Tanner Jay Longstreet passed away in 2013 from a Glioblastoma Brain Tumor. Tanner tested positive for the mutant p53 gene, a hereditary cancer gene. Tanner Project Foundation is dedicated to monitoring individuals predisposed to hereditary diseases before they begin and utilizing genomic research for personal medical care. Research and medical collaborators include the University of California at Los Angeles and San Diego; J. Craig Venter Institute; Human Longevity Inc.; Scripps Health; Children’s Hospital Orange County and Children’s Hospital Los Angeles.

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Led by agency President and Chief Creative Officer Claudio Gutierrez, CG Creative will work closely with Tanner Project co-founder Marlo Gottfurcht Longstreet to help the foundation reach families, patients and the healthcare community. The recent launch of the official Tanner Project Foundation website, www.tannerproject.org, marks the first marketing initiative to roll out.

“Because the Foundation is so personal and important in my life, it means everything to have a partner that I can trust. I know that Claudio and the entire CG team care deeply about our mission,” notes Gottfurcht Longstreet. “We are excited to begin the important work of honoring Tanner’s legacy by helping people get an upper hand on hereditary disease through early detection.” “Marlo and Tanner have a special place in our hearts,” Gutierrez adds. “I feel so fortunate to be able to apply what we do here at CG Creative to a cause that has the potential to impact so many lives.”

A key component of the site is ease of use, something that is especially important to Marlo’s father and Tanner Foundation co-founder Elliot Gottfurcht. “I wanted to make sure that the message comes through loud and clear,” Gottfurcht explains. “Ensuring that everything is easy to find right from the homepage was a challenge we gave the CG team early on.”

As Gutierrez explains, “Our goal was to support Tanner Project’s critical mission by making information readily available to visitors to the site. The website uses a grid system that makes it easy to navigate with a single click with nearly all of the content ‘above-the-fold.’

Additional features are planned for the site, including resources for finding testing facilities and the creation of a community for patients and families.

Tanner Project Foundation was founded after Tanner Jay Longstreet passed away in 2013 at the age of 11 from a Glioblastoma Brain Tumor. Tanner tested positive for the mutant p53 gene, a hereditary cancer gene. Tanner Project Foundation is dedicated to monitoring individuals predisposed to hereditary diseases, supporting daily health behavior and care through genomic insights. Research and medical collaborators include the University of California at Los Angeles and San Diego; J. Craig Venter Institute; Human Longevity Inc.; Children’s Hospital Orange County and Children’s Hospital Los Angeles.

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