RARE CANCER DAY 2021

Thursday, September 30
12:30 - 1:30pm EST

Virtual

congressional briefing

CANCER PATIENT EQUITY

Rare cancers compose 95 percent of all forms of cancer, over 500,000 diagnoses a year – or almost one-third of all new cancer diagnoses.

These figures are particularly hard on our military, veterans, minority communities, and children. We invite you to a briefing to hear from patients, advocates, researchers, and Members of Congress on the need for target molecular diagnostics and precision medicine for all cancer patients.

Most rare cancers persistently lack adequate data, research, and funding. As a result, cancer patients are frequently misdiagnosed and suffer from inadequate treatment and clinical trial options.

Congress along with advocacy organizations are working to reverse these trends and hope you will join us to learn about the challenges facing patients, researchers, and drug developers, and to learn about possible solutions.

This briefing brings together patients, advocates, researchers, more to talk about the need for more investments in rare cancer treatments. Please join:

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Panelists

Dr. Catharine Young, PhD

Executive Director SHEPHERD Foundation

Dr. Catharine Young holds a doctorate degree in Biomedical Sciences and most recently served as the Senior Director of Science Policy for the Biden Cancer Initiative. Here she forged relationships and collaborations within the biotech, technology, science, and academic fields to drive innovative solutions and breakthroughs against cancer. Prior to this position, Catharine served as the Senior Science and Innovation Policy Advisor and Head of the DC team for the Foreign Ministry of the UK. Based at the British Embassy, Catharine influenced science and innovation policies of both the UK and US governments, industry, and academia. Following her Postdoctoral training at Cornell University in Biomedical Engineering, Catharine was selected as a AAAS Science and Technology Policy Fellow in the Office of the Assistant Secretary of Defense for Nuclear, Chemical, and Biological Defense Programs. Here she led international engagements on eliminating biological weapons, improving biosafety and biosecurity, and assisting in the DoD's response to the Ebola outbreak in Western Africa. Catharine also co-founded Blueprint International, a non-profit dedicated to providing novel technological solutions to some of the world’s most pressing social issues. 

 

Recent awards include being selected as a TED Fellow, Alexandria 40 Under 40 and Social Enablers top 100 most inspiring social entrepreneurs. Catharine is an advocate for women in STEM and has been a contributor to major social and media networks including TED-Ed, the Guardian and the UK Science and Innovation Network.

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Reed Jobs leads Emerson’s team in the health care space. With a sole focus on oncology, his team accelerates the discovery and translation of cancer research to best improve and empower the lives of patients.

To achieve this, Reed is an active philanthropist and venture investor. His philanthropic portfolio includes several competitive grant programs with major research entities in the U.S. and the U.K. Additionally, he is involved in the creation of a nonprofit organization to house altruistically donated patient genomic and clinical data to be made available to researchers across the United States, upon request.

Kara Amey

Rare Cancer Patient

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Kara Amey had a rare brain cancer at age 10; she is now a four time rare cancer survivor. Currently, she is battling a fifth rare brain cancer. Kara is passionate in her advocacy for better treatments for pediatric and adult cancers. She has a degree in fashion merchandising; and she lives in Virginia. 

 

Dr. Giselle Saulnier Sholler, MD

Director of the Isabella Santos Foundation Rare and Solid Tumor Program at Levine Children’s Hospital

Dr. Sholler is board certified in pediatric hematology-oncology (cancer and blood disorders) and is known around the world for her groundbreaking research. She specializes in pediatric solid tumors with a focus on neuroblastomas, diffuse intrinsic pontine gliomas (DIPG), embryonal tumors with mutilayered rosettes (ETMR) and medulloblastomas. 

She is the director of the Isabella Santos Foundation Rare and Solid Tumor Program at Levine Children’s and the professor of pediatrics and principal investigator of the Sholler Pediatric Oncology Research Laboratory at Levine Children’s Hospital. She is also the chair of the Beat Childhood Cancer Consortium. 

She has been honored with the WGVU Engage Award for Person of the Year in 2015 and the Barton Kamen Metronomics Global Health Initiative Award in 2016. 

The research she conducts at the Sholler Pediatric Oncology Research Laboratory focuses on 3 main areas. First is the targeting of neuroblastoma cancer stem cells to prevent relapse focused on a drug called DFMO. The second is in precision medicine through testing of novel agents for a panel of cancers including neuroblastomas, brain tumors and sarcomas to develop new clinical trials. The third is in the genomic understanding of patient tumors and generation of individual patient tumor models.

 

Dr. Corrie Painter, PhD

Deputy Director of Count-Me-In, Broad Institute, rare cancer survivor

Corrie Painter is the associate director of operations and scientific outreach in the Cancer Program of the Broad Institute of MIT and Harvard. She leads the Angiosarcoma Project, a nationwide direct-to-patient genomics initiative aimed at generating the genomic landscape of this orphan disease, and she is working to build scientific resources to enable broad-scale rare cancer research across many indications.

 

A trained cancer researcher with a Ph.D. in biochemistry, Painter serves as the associate director of Count Me In, which launches patient-driven research projects across multiple cancer types. In this role, she partners with advocacy groups and engages patients with metastatic breast cancer, angiosarcoma, and other cancers through social media.

 

Reed Jobs

Managing Director of Health, Emerson Collective, son of the late Steve Jobs

Reed Jobs leads Emerson’s team in the health care space. With a sole focus on oncology, his team accelerates the discovery and translation of cancer research to best improve and empower the lives of patients.

To achieve this, Reed is an active philanthropist and venture investor. His philanthropic portfolio includes several competitive grant programs with major research entities in the U.S. and the U.K. Additionally, he is involved in the creation of a nonprofit organization to house altruistically donated patient genomic and clinical data to be made available to researchers across the United States, upon request.

 

Congressman G.K. Butterfield [D-NC]

Co-Chair of the Rare Disease Caucus and former Chair of the Congressional Black Caucus

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Congressman Butterfield is a champion of affordable health care, education, investments in rural communities, veterans, renewable energies, and federal programs that support low-income and middle-class Americans. He is Co-Chair of the Rare Disease Congressional Caucus, which helps bring public and Congressional awareness to the unique needs of the rare disease community (including patients, physicians, scientists, and industry), and creates opportunities to address roadblocks to the development of and access to crucial treatments. The Caucus gives a permanent voice to the rare disease community on Capitol Hill. Working together, we can find solutions that turn hope into treatments.

 

Cogngressman Butterfield also serves in the Democratic leadership as Chief Deputy Whip and is a past Chair of the Congressional Black Caucus (114th Congress). He sits on the influential Committee on Energy & Commerce where he serves as the Vice Chair of the Subcommittee on Health. In addition, he serves as a member of the Subcommittees of Communications and Technologyand Energy. In the 116th Congress, Congressman Butterfield also sits on the Committee on House Administration where serves as a member of the Subcommittee on Elections. He is a life-long member of Jackson Chapel First Missionary Baptist Church. He is a veteran of the U.S. Army and a proud father and grandfather.

 
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Alonzo Bodden

Comedian, TV Host, NPR's Wait Wait Don't Tell Me Panelist

A regular panel member on NPR’s Wait Wait…Don’t Tell Me, Alonzo Bodden has been making audiences around the country laugh for more than 20 years, including as the emcee for Cancer Support Community Los Angeles (CSCLA)  5th annual Gilda Gala

In August 2019, Alonzo starred in his fourth stand-up special, Alonzo Bodden: Heavy Lightweight, which premiered exclusively on Amazon Prime Video. In the special, he touches upon a range of topics from slavery, cell phones and the #MeToo movement, to millennials, Kanye West and Taco Bell.

Alonzo’s first big comedy break came when he was on the “New Faces of Comedy” showcase at the Just for Laughs Festival in Montreal. However, it was as the season three winner of NBCʼs Last Comic Standing, where Alonzo was first introduced to America. Since then, he has starred in two comedy specials for Showtime: Historically Incorrect and Who’s Paying Attention. His television appearances include ABC’s Dr. Ken and Fresh Off the Boat, Dr. Phil, The Tonight Show with Jay Leno, Late Night with Conan O’Brien, Comedy Central’s The Nightly Show with Larry Wilmore and Californication.

Alonzo released his fifth comedy CD titled Man Overboard in 2018. He currently hosts the podcast Who’s Paying Attention? (part of All Things Comedy) where he gives his unique take on what’s going on in the world.  

 

Congressman Bilirakis [R-FL] Co-Chair of the Rare Disease Caucus

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Congressman Gus M. Bilirakis is a Republican from Palm Harbor, representing Florida’s 12th Congressional District, which includes all of Pasco and northern parts of Pinellas and Hillsborough counties. He was first elected to Congress on November 7, 2006. Gus serves on the Energy and Commerce Committee.  He is the Ranking Member of Consumer Protection & Commerce Subcommittee and a Member of the Health Subcommittee and Communications and Technology Subcommittee.  With 38 bills he authored signed into law since 2015, Congressman Bilirakis was recently designated as the Most Effective Republican Lawmaker in the State of Florida by the Center for Effective Lawmaking at Vanderbilt University.   

Working in a bipartisan manner, his main priorities include controlling government spending, creating jobs for middle class Americans, finding ways for government to operate smaller and smarter, and lowering taxes. He is also committed to strengthening homeland security, improving education, increasing access to quality health care, lowering the cost of prescription drugs, protecting Veterans’ benefits, ensuring the long-term viability of Social Security and Medicare, and improving emergency preparedness and response.

 

Lisa Ward

DIPG Advocate and bereaved mother of Jace Ward

COMING SOON

 
 

David Hysong

Founder and CEO of SHEPHERD, rare cancer survivor

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David had just completed officer selection for Special Operations in the U.S. Military and was a graduate student at Harvard when he was diagnosed with Adenoid Cystic Carcinoma (ACC)—an ultra-rare, untreatable head and neck cancer. He was 27. David’s form of cancer,like so many, does not respond to chemotherapy and has no approved targeted therapies—a reality he refused to accept. Instead, he founded SHEPHERD for the millions of Americans battling rare cancer. 

 

David is a Forbes 30 Under 30 honoree and former Spotlight Health Scholar at the Aspen Institute. He holds a B.A. in Economics, Philosophy and French Literature from Transylvania University, a M.A.L.A. in Intellectual History from St. John’s College, a M.Div from HarvardUniversity in Religion, Ethics & Politics, and is currently completing his Executive MBA through the Owner/President Management Program at Harvard Business School.