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Clearity Newsletter
November 2012

Greetings!

Researching Cancer. Advocating for better therapies. Surviving. These are daunting, sometimes all-consuming tasks. During this month in which we stop to give thanks, The Clearity Foundation wants to express its gratitude for the strength, intelligence and perseverance of the women with ovarian cancer that we serve, our volunteers, donors, and everyone in the community working to change the practice of trial-and-error cancer therapy.  

In this issue we highlight:
  • Biotech veteran Peter Johnson challenges Clearity's donors with a matching gift of $30,000
  • Clearity and Annai Systems announce the implementation of a software-driven system to help Clearity more efficiently integrate and interpret data. Click here to read the press release
  • Helen Gardner, a cancer survivor who's raising funds through the Wheel to Survive indoor cycling event
  • Clearity's October 23 Personalized Medicine Oncology Series
  • Clearity thanks Dr. Marc Whitlow for database development work
  • Clearity endorses measure to give patients access to their lab results
Donate to Clearity's Matching Gift:

 

Peter Johnson, a cofounder of Annai and a cofounder of Agouron Pharmaceuticals, has generously made a $30,000 contribution to Clearity as a matching gift. Through the remainder of November and throughout December, donations to Clearity will be matched dollar-for-dollar, up to $30,000 with this generous gift. Donations of $100 or more made before December 3rd will be recognized during Clearity's fundraising event on December 15. 

 

"I hope you'll join me in supporting Clearity's mission of bringing the promise of personalized medicine to patients today," said Mr. Johnson. "Genomic discoveries are being made at an accelerating pace, but are too slowly bringing help to the patients who courageously battle every day with the cancers that are most difficult to treat, like ovarian cancer. I'm gratified to be able to support individualized treatment options for women today through this gift to Clearity." Click here to donate to Clearity online.

Thank You from Our Founder
 

Dear Clearity Foundation Supporters,

 

As we enter our 5th year of providing tumor "blueprints" to ovarian cancer patients, I have so much to be thankful for.

 

I would like to express my gratitude to everyone who has helped The Clearity Foundation bring innovation to women who need help. While the founding of Clearity was accomplished through the dedication of friends and colleagues, it has blossomed into a large group of volunteers and advocates who are tireless in their efforts. These volunteers have contributed to our newsletters, they have expanded our biomarker evidence library, our clinical trials coverage, our website capabilities, and created a new database to store profiling test results.

 

I'm also thankful for the support Clearity has received from a wide network of donors and sponsors without whom we could not exist. 

 

You have "cleared a path to a cure" by walking, running, cycling and training - all on behalf of women who are fighting for their lives. I am so very grateful to each of you and for all you do. To facilitate the need to reach more women, we have been fortunate this year to work with Annai Systems and ThoughtWorks, who have generously donated their time and efforts to automate the interpretation of the data and the generation of reports. We are now poised to reach out to more women, provide more help and give more hope.

 

To all of you, thanks for being in the fight with us!

 

Dr. Laura Shawver, founder of The Clearity Foundation

Helen Gardner's Wheel to Survive

Helen Gardner's at it again. On February 17, 2013, Gardner, a survivor of recurrent ovarian cancer who's had multiple surgeries and recently ended a third treatment protocol, will host the Wheel to Survive indoor cycling event in Dallas, Texas to raise money for The Clearity Foundation and ovarian cancer research.

 

Helen connected with Clearity and its founder Laura Shawver on New Year's Eve 2009, shortly after she learned her cancer had recurred and doctors gave her a hopeless prognosis. Laura helped Helen get her tumor "blueprint". Armed with that personalized information, Helen was able to enroll in a clinical trial at Moffitt Cancer Center in Tampa, Fl. Since that first day on the phone with Laura, Helen considered her "my cell sister." Both had the same cancer cell type, and Laura has been a consistent, reliable sounding board, who supported and encouraged Helen as she sought treatments her tumor blueprint showed would be good options for her, even though they may not be the standard of care.

 

"I'm so thankful Laura had the passion (that same passion that I must be feeling now) to start Clearity, and that it is there for so many other women," Helen said. Raising funds through Wheel to Survive to support Clearity's work to provide women their unique tumor "blueprint" is a way Helen said she can show her thanks.

 

Last year Helen and her co-founders of the Wheel to Survive event hoped to raise $100,000. They raised $300,000. But it wasn't enough. Helen and her event co-chairs, also ovarian cancer survivors, want to do more to give women hope. They've all been faced with the statistics that could easily have left them with none: 22,000 women a year diagnosed with the disease and a 70 percent mortality rate. No early detection methods. Symptoms frequently go undiagnosed.

 

Earlier this year, the women founded Be the Difference Foundation, which aims to fund programs for better treatment options, effective early screening, symptomatic and genetic predisposition awareness and a cure. They are hosting the Wheel to Survive cycling event in Dallas, and hope to match the $300,000 raised last year. This year they are adding a second Wheel to Survive event, which will be held in San Diego on May 5, 2013 and will be organized by volunteer Naomi Whitacre, a 10-year ovarian cancer survivor, advocates and fundraises for Clearity, assists other survivors and helps medical students and nurses understand patients' needs. Look for Naomi's story in next month's newsletter.

 

"This is the rest of my life, so I can either sit at home and wait to die, or I can get out there and live my life and give back," Helen said. In the meantime, she has a whole list of things for which she's thankful: "Of course my family - my husband, kids, parents and friends - I'm blessed to be surrounded by people who are such an amazing support system and who have graciously stood by me for four years and endured this along with me."

 

She is also thankful for the co-founders of the Be the Difference Foundation and other survivor friends, who have all "embraced the beauty of reaching out and helping someone else and joining me in trying to be the difference in someone else's life," Helen said.

 

"Having a grateful heart is very empowering," Helen said. "To be able to reach out and help other people is very enriching; it makes your life better, and gives you purpose. Making people more aware of ovarian cancer and talking to so many survivors, over and over again, giving them hope, it's a very important part of my existence now." 

 

"Laura and Clearity gave me hope," she said. Clearity is changing lives right now, by helping women get molecular testing that could point them and their doctors to more effective treatments, she said. And it is improving lives in the future, she said, by being a part of the medical community shift to personalized medicine.

 

For more information about Wheel to Survive go to the Be the Difference Foundation website and click on Wheel to Survive, which will provide information about both the Dallas and San Diego events.

Clearity Foundation's Personalized Medicine Oncology Series: Oct. 23, 2012: Harnessing New Technologies for Better Diagnosis, Targeted Treatment
By Terri Somers

 

Cancer treatment hasn't improved as much as society hoped it would in the 40 years following President Richard M. Nixon's making $1.6 billion available for what became known as the War on Cancer. 

 

Technology, however, has advanced at an astonishing pace since then. And in the next 10 years, new technologies are expected to teach us more about cancer than we have learned in the last five decades combined, said Ron Andrews, President of Medical Science at Life Technologies in Carlsbad. Unfortunately, we should not expect this knowledge to uncover the secret to curing cancer, Andrews told a group of patient advocates, life science professionals and media gathered for the Clearity Foundation's October 23 panel discussion on personalized medicine.

 

People who don't understand cancer may subscribe to the idea that the cure is elusive because life science companies, researchers and/or the government make a profit on people remaining sick. The frustrating truth is that cancer isn't one disease. It's hundreds of diseases. And it is the metastatic nature of cancer that makes it so deadly and hard to combat, said David Nelson, CEO of Epic Sciences, and moderator of the panel discussion. "If we are going to impact cancer, we are going to have to understand metastasis," Nelson said.

 

Harnessing advanced technologies to develop methods for visualizing and tracking cancer cells before they form metastases and finding molecular commonalities between the hundreds of different cancer types are exactly what the "bright stars" of research and medicine represented on the Clearity panel are trying to do, Nelson told the more than 100 people attending the event.

 

Joining Andrews on the panel was Foundation Medicine CEO Michael Pellini, M.D., and The Scripps Research Institute Associate Professor Peter Kuhn, Ph.D. All three men discussed how their employers are using proprietary technologies to contribute to better, more personalized cancer diagnosis, treatment and outcomes. Through their presentations and the ensuing Q&A session, the Clearity gathering helped to continue building a community consensus and agenda for making personalized medicine a widely accepted standard of care.

 

A major theme of the evening was the challenge of convincing regulators and payers to embrace the genetic testing that allows for targeted, personalized medicine. The issue continues to be a major challenge for patients, clinicians, diagnostics companies and the therapeutic companies with which they partner. If reimbursement issues aren't fixed, the investment in new diagnostics and targeted therapies isn't going to happen as it should, the panelists said.

 

That's where Clearity Foundation plays an important role, Andrews said. It can play a part in getting the new wave of genomic information to patients.

 

In the meantime, the San Diego business community has an opportunity to come together to address the issue, said Kuhn. "We know how to deploy investment. We know so much about targets and oncology is one of our sweet spots. We need to get together with private investors and be a part of the solution, and get the entire business community on board," he said.

 

Author Terri Somers is a Principal of Somers Media

 

 

Clearity Thanks Marc Whitlow
 

The Clearity Foundation is thankful for the efforts of Dr. Marc Whitlow, who has been involved with Clearity since December 2011 and whose ingenuity and skills are helping Clearity serve women more effectively and efficiently.

 

Marc, a biophysicist-programmer-entrepreneur at Colabrativ Inc., volunteered his time and expertise to create a new database application for Clearity. The application captures the results of patients' tests directly from reports issued by the laboratories that are used to generate tumor profiles for Clearity. It organizes all of the testing data and it also stores all of the Molecular Profiling Summary Reports so that all the information is accessible with the click of a mouse.

 

Marc designed this application so that it can interface with MedTrust Evidence Engine - E2, a software system hosted by Annai Systems. MedTrust E2 can draw upon scientific literature and the hands-on experience of health care professionals to distill "lines of evidence" bearing on the feasibility of alternative drug therapies for specific patients on the basis of the molecular profiles of individual tumors. By running the information through MedTrust E2, data is interpreted in the context of an emerging rapid-learning environment that will be used to further inform treatment decision-making.

 

Today the new database application built for Clearity, coupled with the Annai engine, is making a big impact on the foundation's efficiency. It allows us to serve more patients and spend more time with them because we spend less time with data entry and report writing.  

 

Thank you Marc for your enthusiasm for our mission and for providing us with this incredible product of your expertise and time!

 

Clearity Endorses Expanded Patient Access to Test Results
 

The Clearity Foundation has joined over 600 signatories in a consensus letter supporting the proposed federal rule to expand the rights of patients to access their medical test results directly from laboratories. Collectively, the advocacy community has demonstrated a strong and powerful endorsement for the proposed rule, which is expected to help push the matter forward.

 

The letter was submitted to Secretary of Health and Human Services Kathleen Sebelius on October 26. Click here to read the letter.

 

On Sept. 14, 2011, HHS and other agencies proposed the rule that would give patients in all 50 states expanded rights to their health records. The proposed rule would remove exceptions for CLIA-certified and CLIA-exempt labs from the HIPPA right of access to one's protected health information.



As you can see, The Clearity Foundation is full of gratitude this year. Thank you so much for being a part of our community.