Reach 2016

We are thrilled to announce The 2016 International LFS Conference & The 3rd Annual LiFE Consortium and LFS Association Conference presented by Soccer for Hope being held June 1 through 3, 2016, under the auspices of the Division of Hematology, Oncology and BMT of Nationwide Children's Hospital and The Ohio State University, in Columbus, Ohio. Thanks to the leadership of Dr. David Malkin of Toronto Sick Children's Hospital, Co-Chair of the Scientific Committee, we can confirm that 30 of the world’s foremost physicians and scientists in the fields of cancer genetics and LFS research will present at this conference. We anticipate more than 250 physicians, scientists, specialists, and family members affected by LFS from across the globe will participate.

Schedule

  • 01 June
  • 02 June
  • 03 June

ARRIVAL AND REGISTRATION

15:00 20:00

WELCOME ADDRESS

17:00 17:40

DR. DAVID MALKIN, HOSPITAL FOR SICK CHILDREN, TORONTO, AND LiFE CONSORTIUM CHAIR

17:00 17:10

DM Dr. David  Malkin

DR. JONATHAN FINLAY, DR. JOHN BARNARD, NATIONWIDE CHILDREN’S HOSPITAL

17:10 17:20

DF Dr. Jonathan Finlay

DB Dr. John Barnard

OLIVER WYSS, FOUNDER, SOCCER FOR HOPE

17:20 17:30

OW Oliver Wyss

DR. ROBERT LUFKIN, MEDICAL DIRECTOR, LFSA

17:30 17:40

DL Dr. Robert Lufkin

KEYNOTE ADDRESS: AMANDA GARBATINI, ‘AN LFS PATIENT’S STORY’

17:40 17:55

AG Amanda Garbatini

WYSS FAMILY KEYNOTE LECTURE: DR. LOUISE STRONG, MD ANDERSON CANCER CENTER, HOUSTON

17:55 18:40

DS Dr. Louise Strong

JENN PERRY, PRESIDENT, LFSA

18:40 18:50

Jennifer Perry

OPENING COCKTAIL RECEPTION AND POSTER SESSION

18:50 21:30

FULL BREAKFAST BUFFET

07:00 08:00

SESSION 1: LI-FRAUMENI SYNDROME: THE HUMAN PHENOTYPE (I) - SESSION CHAIR: DR. JUDY GARBER, USA

08:00 10:05

DR. JUDY GARBER, DANA-FARBER CANCER INSTITUTE, BOSTON

08:00 08:25

DG Dr. Judy Garber

DR. GARETH EVANS, UNIVERSITY OF MANCHESTER, MANCHESTER, UK

08:25 08:50

DE Dr. Gareth Evans

DR. PATRICIA PROLLA, PORTE ALLEGRE, BRAZIL

08:50 09:15

DP Dr. Patricia Prolla

DR. HANY ARIFFIN, MALAYSIA

09:15 21:40

DA Dr. Hany Ariffin

PROF. PIERRE HAINAUT, GRENOBLE, FRANCE

09:40 10:05

PH Prof. Pierre Hainault

COFFEE BREAK

10:05 10:30

SESSION 2: MODELING LI-FRAUMENI SYNDROME - SESSION CHAIR: DR. JOSH SCHIFFMAN

10:30 11:45

PROF. CHANG CHAN, NEW JERSEY RESEARCH INSTITUTE, BRUNSWICK, NJ, USA

10:30 10:55

PC Prof. Chang Chan

PROF. GERRY ZAMBETTI, ST JUDE CHILDREN’S RESEARCH HOSPITAL, MEMPHIS

10:55 11:20

PZ Prof. Gerry Zambetti

PROF. DAVID LANGENAU, DANA-FARBER CANCER INSTITUTE, BOSTON

11:20 11:45

PL Prof. David Langenau

LUNCH

11:45 13:00

SESSION 3: THE UNIQUE BIOLOGY OF P53 VIS A VIS LFS - SESSION CHAIR: DR. DAVID MALKIN

13:00 14:15

PROF. VARDA ROTTER, WEIZMANN INSTITUTE OF SCIENCE, USA

13:00 13:25

PR Prof. Varda Rottier

PROF. IHOR LEMISCHKE, ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI, NEW YORK

13:25 13:50

PROF. VARDA ROTTER, WEIZMANN INSTITUTE OF SCIENCE, USA

13:50 14:15

2:15-3:05: SESSION 4: THERAPEUTIC OPPORTUNITIES FOR P53 AND LFS – SESSION CHAIR: DR. MARIA ISABEL ACHATZ

14:15 15:05

DA Dr. Maria Isabel Achatz

DR. WAYNE DANTER, CRITICAL OUTCOME TECHNOLOGIES, LONDON, CANADA

14:15 14:40

DD Dr. Wayne Danter

PROF. GALINA SELIVANOVA, KAROLINSKA INSTITUTE, SWEDEN

14:40 15:05

PS Prof. Galina Selivanova

COFFEE BREAK

15:05 15:30

SESSION 5: THERAPEUTIC OPPORTUNITIES FOR P53 AND LFS (Cont’d) – SESSION CHAIR: DR. JONATHAN FINLAY

15:30 16:45

DR. FARZANA WALCOTT, GEORGE WASHINGTON UNIVERSITY, USA

15:30 15:55

DW Dr. Farzana Walcott

DR. JOSHUA SCHIFFMAN, HUNTSMAN CANCER INSTITUTE, SALT LAKE CITY

15:55 16:20

DS Dr. Joshua Schiffman

PROF. PAUL HWANG, NATIONAL INSTITUTES OF HEALTH, USA

16:20 16:45

PH Prof. Paul Hwang

SESSION 6: GENETIC TESTING CHALLENGES – SESSION CHAIR: DR. JEFFREY WEITZEL

16:45 18:25

DR. JEFFREY WEITZEL, CITY OF HOPE, USA

16:45 17:10

DW Dr. Jeffrey Weitzel

DR. THIERRY FREBOURG, ROUEN, FRANCE

17:10 17:35

DF Dr. Thierry Frebourg

DR. CHIMENE KESSERWAN, ST JUDE CHILDREN’S RESEARCH HOSPITAL, MEMPHIS, USA

17:35 18:00

DK Dr. Chimene Kesserwan

LFS COMMUNITY DINNER

19:00 21:30

CONTINENTAL BREAKFAST

07:00 08:00

SESSION 7: PSYCHOSOCIAL/COUNSELING/ETHICS ISSUES IN LFS – SESSION CHAIR: MS. ELIZABETH VARGA

08:00 08:50

PROF. ANDREA PATENAUDE, DANA-FARBER CANCER INSTITUTE, BOSTON, USA

08:00 08:25

PP Prof. Andrea Patenaude

MS. ELIZABETH VARGA, MS, LGC, NATIONWIDE CHILDREN’S HOSPITAL, COLUMBUS, USA

08:25 20:50

MV Ms. Elizabeth Varga

SESSION 8: SHORT PRSENTATIONS (FROM SUBMITTED ABSTRACTS) - SESSION CHAIR: DR. GARETH EVANS

08:50 09:40

DR. YUKIKO TSUNEMATSU, JUNTENDO UNIVERSITY SCHOOL OF MEDICINE, TOKYO, JAPAN

08:50 09:00

DT Dr. Yukiko Tsunematsu

PROF. WENYI WANG, MD ANDERSON CANCER CENTER, HOUSTON, USA

09:00 09:10

PW Prof. Wenyi Wang

MS.EMILY HILL, SCHOOL OF HEALTH AND REHABILITATION SCIENCES, OSU, COLUMBUS, USA

09:10 09:20

MH Ms. Emily Hill

DR. MICHAEL WALSH, MEMORIAL SLOAN-KETTERING CANCER CENTER, NEW YORK, USA

09:20 09:30

DW Dr. Michael Walsh

DR. EMILIA PINTO, ST. JUDE CHILDREN’S RESEARCH HOSPITAL, MEMPHIS, USA

09:30 09:40

DP Dr. Emilia Pinto

SESSION 9: TUMOR SURVEILLANCE IN LFS – SESSION CHAIR: DR. SHARON SAVAGE

09:40 10:55

DS Dr. Sharon Savage

DR. MARIA ISABEL ACHATZ, A.C. CARMAGO HOSPITAL, SAO PAOLO, BRAZIL

09:40 10:05

DA Dr. Maria Isabel Achatz

DR. PHUONG MAI, CLINICAL GENETICS BRANCH, NCI, BETHESDA

10:05 10:30

DM Dr. Phuong Mai

DR. DAVID MALKIN, HOSPITAL FOR SICK CHILDREN, TORONTO, CANADA

10:30 10:55

DM Dr. David  Malkin

SESSION 10: PROVOCATIVE QUESTIONS AND PRIORITIES: SESSION CO-CHAIRS: OLIVER WYSS (SOCCER FOR HOPE) JENN PERRY (LFS ASSOCIATION)

10:55 11:40

DE Dr. Gareth Evans

DS Dr. Louise Strong

DL Dr. Robert Lufkin

DM Dr. David  Malkin

DS Dr. Joshua Schiffman

LUNCH

11:40 12:20

DOES DNA = DESTINY? DECIPHERING EVIDENCE-BASED GUIDELINES FOR DIET & PHYSICAL ACTIVITY SPEAKER: DR. COLLEEN SPEES, OSU COMPREHENSIVE CANCER CENTER

12:20 13:20

DS Dr. Colleen Spees

A LI-FRAUMENI PREVIVOR, SURVIVOR AND RESEARCH PARTNER SPEAKER: DR. FARZANA WALCOTT, NATIONAL CANCER INSTITUTE

13:20 14:05

DW Dr. Farzana Walcott

BREAK & SNACKS

14:05 14:30

AN OPEN DIALOGUE FOR THE LFS COMMUNITY

14:30 15:30

DS Dr. Sharon Savage

DW Dr. Farzana Walcott

DA Dr. Maria Isabel Achatz

MP Ms. June Peters

DS Dr. Joshua Schiffman

NEXT STEPS & CONFERENCE CLOSE WITH DR. JOSH SCHIFFMAN AND JENN PERRY

15:30 16:00

Jennifer Perry

DS Dr. Joshua Schiffman

Sponsors

Exhibitors

Speakers

AG

Amanda Garbatini

01 June

DK

Dr. Chimene Kesserwan

St. Jude Children's Research Hospital, Memphis

02 June

DS

Dr. Colleen Spees

OSU Comprehensive Cancer Center

03 June

DM

Dr. David Malkin

Hospital for Sick Children, and LiFE Consortium Chair

01 June

03 June

03 June

DP

Dr. Emilia Pinto

St. Jude Children's Research Hospital, Memphis

03 June

DW

Dr. Farzana Walcott

Gerorge Washington University

02 June

03 June

03 June

DE

Dr. Gareth Evans

University of Manchester, Manchester, UK

02 June

03 June

DA

Dr. Hany Ariffin

02 June

DW

Dr. Jeffrey Weitzel

City of Hope

02 June

DB

Dr. John Barnard

01 June

DF

Dr. Jonathan Finlay

01 June

DS

Dr. Joshua Schiffman

Huntsman Cancer Institute, Salt Lake City

02 June

03 June

03 June

03 June

DG

Dr. Judy Garber

Dana-Farber Cancer Institute, Boston

02 June

DS

Dr. Louise Strong

MD Anderson Cancer Center, Houston

01 June

03 June

DA

Dr. Maria Isabel Achatz

A.C. Carmago Hospital, Sao Paolo, Brazil

02 June

03 June

03 June

DW

Dr. Michael Walsh

Memorial Sloan-Kettering Cancer Center, New York

03 June

DP

Dr. Patricia Prolla

Porte Allegre, Brasil

02 June

DM

Dr. Phuong Mai

Clinical Genetics Branch, NCI, Bethesda

03 June

DL

Dr. Robert Lufkin

Medical Director
LFSA

01 June

03 June

DS

Dr. Sharon Savage

MS

03 June

03 June

DF

Dr. Thierry Frebourg

02 June

DD

Dr. Wayne Danter

Critical Outcome Technologies, London, Canada

02 June

DT

Dr. Yukiko Tsunematsu

Juntendo University School of Medicine, Tokyo

03 June

Jennifer Perry

President/Co-Founder
LFSA
Jenn is married to her best friend and love of her life, Bert, with two wonderful girls. Samantha is 20, just graduated, and started her career in Hairdressing, and Lexi is 11. Jenn currently works with Dunkin’ Donuts Brand serving as an Operations Manager. Jenn enjoys many activities, but her passion is competitive show jumping in the equestrian world. In fact, she has designed and executed two different annual walks for cancer, one of them, Hoofin’ For The Cure, involved her horse Maximus.

01 June

03 June

MV

Ms. Elizabeth Varga

MS, LGS, Mationwide Children's Hospital, Columbus

03 June

MH

Ms. Emily Hill

School of Health Rehabilitation Sciences, OSU, Columbus

03 June

MP

Ms. June Peters

03 June

OW

Oliver Wyss

01 June

PP

Prof. Andrea Patenaude

Dana-Farber Cancer Institute, Boston

03 June

PL

Prof. Arnold Levine

Institute for Advanced Studies
PP

Prof. Carol Prives

Columbia University, New York
PC

Prof. Chang Chan

New Jersery Research Institute,

02 June

PL

Prof. David Langenau

Dana-Farber Cancer Institute, Boston

02 June

PS

Prof. Galina Selivanova

Karolinska Institute, Sweden

02 June

PZ

Prof. Gerry Zambetti

St. Jude Children's Research Hospital, Memphis

02 June

PL

Prof. Ihor Lemischke

Icahn School of Medicine at Mount Sinai, New York
PH

Prof. Paul Hwang

National Institute of Health

02 June

PH

Prof. Pierre Hainault

02 June

PR

Prof. Varda Rottier

Weizmann Institute of Science

02 June

PW

Prof. Wenyi Wang

MD Anderson Cancer Center, Houston

03 June

Soccer for Hope

Conference Sponsor
Soccer For Hope is a non-profit organization founded by Oliver and Jamie Wyss in 1998. Oliver is a former professional soccer player and survivor of a non-cancerous illness, Aplastic Anemia, thanks to a bone marrow transplant. The organization has been driven by their goal to raise desperately needed funds and awareness for children with life threatening diseases. Years later their own young children, Hudson and Abella, were BOTH diagnosed with very rare cancerous brain tumors. After battling multiple recurrences and secondary cancers both children lost their lives; Hudson at age 3 and Abella at age 11. These precious children have faced an unimaginable journey and all along have taught us the definition of true courage and bravery by accepting their challenges.

No child should ever face cancer! These difficult times have honed the vision for Soccer For Hope to focus on childhood cancer research, awareness and essential family support. Since its inception, Soccer For Hope has benefitted thousands of children and their families across the U.S. In the last 18 years they have raised over $2.5 million dollars for hospitals and foundations nationwide. They host a variety of events from soccer camps & inspiration walks to gala dinners & movie screenings. Their hope is to continue these efforts along with raising awareness for the many orphan cancers that receive little or no funding.

LFS Association

Conference Sponsor
We are families, like you who have been devastated by the effects of Li-Fraumeni Syndrome (LFS), a hereditary genetic cancer predisposition syndrome. Our hopes are to educate, raise awareness, and find better screening programs and treatments for LFS. By forming relationships with and supporting the variety of researchers and medical staff who can help achieve this, we wish to help provide a better understanding of a complex syndrome to those who need it. We welcome communication with all professionals, researchers, scientists, doctors, patients, and families in the hopes that the bridges formed by these communities will lead to an end of the devastating effects of Li-Fraumeni and other Li-Fraumeni-like syndromes.

In November 2010, with the support of the United States’ National Institute of Health (NIH) and the world’s medical leaders of the Li-Fraumeni Syndrome, we all met in Washington D.C. at the first Li-Fraumeni Syndrome Conference. One month later, in December 2010, we officially formed the LFS Association.

Vision
We are a community of Li-Fraumeni Syndrome families and survivors. We are the building blocks of a future without LFS. Together we will bridge the gap between patients and professionals who have the same goal.

Nationwide Children's Hospital

Conference Sponsor
At Nationwide Children’s, we are creating the future of pediatric health care. We are more than a hospital. We are one of America’s largest pediatric health care and research centers delivering care for more than one million patient visits each year. Families travel from around the nation and around the globe to access life-saving treatments – many unavailable anywhere else. We are 68 facilities extending out across Ohio and beyond. It’s the pediatric expertise every child needs. Here, the future health and potential of all children, is being shaped. Here, our doctors and researchers are revolutionizing your child’s health and the health of future generations.

The Ohio State University

Conference Sponsor
The Ohio State University Wexner Medical Center is the leader in central Ohio for healthcare and medical research.

Myriad

Community Dinner Sponsor
At Myriad, our goal is to make a difference in patients’ lives and our work has been guided by this mission throughout the Company’s history.

Myriad is focused on revolutionizing patient care through the discovery, development and marketing of transformative molecular diagnostic tests that address pressing clinical needs across multiple medical specialties.

Since 1991, Myriad has invested heavily in educating patients and healthcare professionals about the role genes and proteins play in disease. More than 1.5 million patients have already benefited from Myriad’s hereditary cancer genetic testing, which helps healthcare professionals better manage and tailor medical care.

Today, Myriad continues this strong tradition. We are expanding our reach and increasing our impact on patient care by introducing new molecular diagnostic and companion diagnostic tests for a growing number of diseases.

We also are focused on expanding internationally in an effort to broaden our geographic footprint and provide our life-saving products and services to patients and healthcare professionals around the world.

James Cancer Center

Sponsor
At The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute (OSUCCC – James), our vision is to create a cancer-free world, one person, one discovery at a time. This underlies everything we do in working to eradicate cancer through research that translates to innovative and highly targeted patient care.

The OSUCCC – James is the only cancer program in the United States that features a National Cancer Institute (NCI)–designated comprehensive cancer center aligned with a nationally ranked academic medical center and a freestanding cancer hospital on the campus of one of the nation’s largest public universities.

Cancer is no longer defined solely by stage and location, but rather by its biologic and genetic makeup. There is no routine cancer — it is different in each person. Working together and utilizing state-of-the-art facilities and technology, clinicians and researchers at Ohio State are speeding the development and delivery of treatments that target the molecules and markers fueling each person’s unique cancer.

Lurie Children’s Hospital of Chicago

Sponsor
About
Ann & Robert H. Lurie Children’s Hospital of Chicago, formerly Children’s Memorial Hospital, provides superior pediatric care in a setting that offers the latest benefits and innovations in medical technology, research and family-friendly design.

As the largest pediatric provider in the region with a 130-year legacy of excellence, kids and their families are at the center of all we do. Learn more about our family-centered approach to care.

Pediatric Research
Stanley Manne Children's Research Institute, affiliated with Lurie Children's, is devoted to the understanding, prevention and investigation of pediatric illnesses and injuries. All pediatric research at Lurie Children’s is conducted through the Stanley Manne Children’s Research Institute. It has been designated a Northwestern University Feinberg School of Medicine research center for its central role in the university’s integrated research program.
Established in 1986, our pediatric research institute has more than 200 investigators, 500 staff members and 100 trainees who contribute to six growing programs in basic research and translational medicine at the research facility. We also have interdisciplinary centers of excellence that target specific child health issues and complement our core programs. Learn more about our research institute.

Foundation
Lurie Children’s relies on philanthropic funding to enhance its programs and services for children and families. Founded in 1987, the Ann & Robert H. Lurie Children’s Hospital of Chicago Foundation is a charitable 501(c)(3) tax-exempt organization with fundraising professionals who work with 11 affiliated organizations and an active team of volunteers to cultivate and secure contributions that advance the mission of the hospital. Learn how you can get involved.

OSU Department of Neurological Surgery

Sponsor
The Department of Neurological Surgery at The Ohio State University Wexner Medical Center is led by world-class leaders in academic research, education and medicine. Our multidisciplinary teams pioneer therapies on every neurological front, such as stroke, neuromodulation, endoscopic skull base approaches, spinal cord and brain implants and other complex operations.

Ohio State’s Neurosurgery residency program, fellowships and education programs provide countless opportunities for collaborative and focused learning at every level — including seminars, lectures and journal clubs. As part of Ohio State’s Neurological Institute, we train tomorrow’s leaders and advance neurological medicine with a collaborative, cross-disciplinary approach.

Ohio State ranks among the nation's top 10 public research universities. Areas of neurosurgical study include stroke, brain tumors, skull base approaches, functional neurosurgery and spinal dynamics.

OSU Department of Radiation Oncology

Sponsor
The Department of Radiation Oncology at the James Cancer Hospital provides advanced personalized radiation oncology care to cancer patients, specific to their individual tumor and clinical situation. The department is an integral part of Ohio State's Comprehensive Cancer Center – James Cancer Hospital and Solove Research Institute (OSUCCC – James). We provide leading-edge radiation therapy care in an environment of subspecialty radiation oncology expertise, education and translational research.

The Tanner Project

Sponsor
Tanner Project Foundation, founded by Marlo Gottfurcht Longstreet, her daughter Casey Longstreet and Marlo's father, Elliot Gottfurcht, is in memory of Marlo's son Tanner Jay Longstreet who 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 that can lead to many types of cancers. Tanner Project Foundation is a non-profit public benefit corporation 501(c)(3).

Mission:
  • Monitoring individuals for very early signs…“Stage Zero”…of predisposed hereditary diseases (such as cancer, heart disease, Alzheimer’s, diabetes, etc.) before they begin.
  • Incorporating genomic insights into an individual’s daily health behavior and health care.
  • Developing personalized care standards according to an individual’s unique genetic and biochemical make-up.
Today, N-of-1 for One…Tomorrow, N-of-1 for Everyone

Ambry Genetics

Ambry has a longstanding heritage of service and collaboration with clinicians, patients, and researchers 

Ambry Genetics is a privately-held healthcare company with the most comprehensive suite of genetic testing solutions for inherited and non-inherited diseases. Since 1999, Ambry has tested approximately half a million patient samples benefiting 90% of all U.S. patients covered by public and private insurers. Ambry is dedicated to scientific collaboration by offering its rapidly growing AmbryShare database (www.AmbryShare.com) of anonymized patient records free to the global medical research community to fulfill the promise of the human genome to cure or manage all human disease. Ambry is dedicated to the belief that human health should not be patented or owned, and genomic data should be freely shared so we can try to cure all disease.

GeneDx

GeneDx specializes in genetic testing for rare hereditary disorders. Our mission is to make clinical testing available to people with rare genetic conditions and their families.

Most of our tests include full gene analysis by DNA sequencing, the gold standard of genetic testing. We invite you to explore our site, where you will find comprehensive information and all of our paperwork. Please note that GeneDx does not provide Direct-to-Consumer testing. All tests must be ordered, and results sent to a health care provider, usually a physician or genetic counselor. Families are encouraged to present our material to their health care providers who can evaluate the appropriateness of testing.

For diagnostic testing in rare disorders, contact GeneDx…
Where rare is common.

Genoptix

Genoptix delivers clear, comprehensive, and clinically actionable results

Oncology Expertise
At Genoptix, we specialize in oncology diagnostics and informatics services. As one of the largest hematopathology centers in the U.S., we provide community oncologists and pathologists with comprehensive testing solutions in hematology and solid tumor molecular profiling. With reliable and clinically actionable reports, we empower clinicians to make more informed decisions and provide better patient care.

A Novartis Company
As a part of Novartis, Genoptix benefits from early access to new biomarkers, knowledge of emerging therapies, and cutting-edge technologies. Informed and enriched by clinical trials and research from Novartis, our suite of diagnostic services continues to pioneer new solutions to move the oncology community forward.

Living LFS

We encourage, empower, and educate those living with Li-Fraumeni Syndrome by connecting them with care, resources, and others who are Living LFS.

Community
– We connect those with Li-Fraumeni Syndrome to each other online and provide support every day. Cancer can be isolating and LFS even more so. Given it’s rarity, most with LFS haven’t met other mutants outside their family. In our private support group, we have members from all over the world who speak many different languages, but most importantly understand LFS. Another benefit of mutants being different time zones also means someone is usually awake to lend an online ear. We strive to make Living with LFS easier through the support network of people who understand hereditary cancer.

Compassion – We are living with LFS. We love those with LFS. No two journeys or experiences are the same. We listen, we communicate and we support. Our group is a safe place. With so many people and a variety of cancers, it is encouraging to share with others in similar situations, overcoming cancer, overcoming fear, loss and other emotional hurdles. In essence, we care for individuals affected by LFS.

Respect – We serve a diverse community and feel everyone has a right to be supported and treated fairly. LFS creeps in to every decision in our lives, not just our medical issues. Decisions about how to plan a family, chart a career, seek treatment, undergo testing, screening and limiting our risk. At Living LFS we recognize these decisions are not easy and we respect that people make tough choices. We respect each situation is unique and hard and we respect each other.

Integrity – We are open, honest and straightforward. We try to do the right thing. We focus our energy and resources on the LFS community we serve. While most of our work is done through a private online support group and is not open to public scrutiny, we are open about all the other aspects of our organization and what we do. We are working with researchers and clinicians to help connect our community to the best resources available for LFS. We also like to share the latest encouraging research.

Levity– We like to laugh. We deal with a lot of situations and challenges that are anything BUT funny. Yet somehow in it all we try to find the laughter and use it as a positive coping mechanism. At Living LFS we try to keep the focus on “living” and promote healing through a uniquely snarky brand of humor. In our support group, we affectionately call ourselves mutants and use this term as a badge of honor, respect and nod to how we try to find fun while living with a hereditary cancer syndrome.

Myriad

At Myriad, our goal is to make a difference in patients’ lives and our work has been guided by this mission throughout the Company’s history.

Myriad is focused on revolutionizing patient care through the discovery, development and marketing of transformative molecular diagnostic tests that address pressing clinical needs across multiple medical specialties.

Since 1991, Myriad has invested heavily in educating patients and healthcare professionals about the role genes and proteins play in disease. More than 1.5 million patients have already benefited from Myriad’s hereditary cancer genetic testing, which helps healthcare professionals better manage and tailor medical care.

Today, Myriad continues this strong tradition. We are expanding our reach and increasing our impact on patient care by introducing new molecular diagnostic and companion diagnostic tests for a growing number of diseases.

We also are focused on expanding internationally in an effort to broaden our geographic footprint and provide our life-saving products and services to patients and healthcare professionals around the world.

National Society of Genetic Counselors

The National Society of Genetic Counselors (NSGC) promotes the professional interests of genetic counselors and provides a network for professional communications. Local and national continuing education opportunities and the discussion of all issues relevant to human genetics and the genetic counseling profession are an integral part of belonging to the NSGC.

This new and important member of the genetics team was introduced in 1971 when the first class of master's degree genetic counselors graduated from Sarah Lawrence College in Bronxville, NY. With this profession's unique knowledge and skills in counseling and human genetics, genetic counseling professionals rapidly became an integral member of the clinical genetics team.

Growth and development within the profession and the recognition of a unique identity provided the impetus for the formation of a responsive professional society. To that end, the National Society of Genetic Counselors was incorporated in 1979.

ARRIVAL AND REGISTRATION

15:00 20:00

The registration process starts.
Main Session

WELCOME ADDRESS

17:00 17:40 BALLROOM

Session Topics

DR. DAVID MALKIN, HOSPITAL FOR SICK CHILDREN, TORONTO, AND LiFE CONSORTIUM CHAIR

17:00 17:10

Speakers

Session Topics

DR. JONATHAN FINLAY, DR. JOHN BARNARD, NATIONWIDE CHILDREN’S HOSPITAL

17:10 17:20

Speakers

Session Topics

OLIVER WYSS, FOUNDER, SOCCER FOR HOPE

17:20 17:30

Speakers

Session Topics

DR. ROBERT LUFKIN, MEDICAL DIRECTOR, LFSA

17:30 17:40

Speakers

Main Session

KEYNOTE ADDRESS: AMANDA GARBATINI, ‘AN LFS PATIENT’S STORY’

17:40 17:55

Speakers

Main Session

WYSS FAMILY KEYNOTE LECTURE: DR. LOUISE STRONG, MD ANDERSON CANCER CENTER, HOUSTON

17:55 18:40

Our evolving perspective of the LFS phenotype: 1969 – 2016

Speakers

Main Session

JENN PERRY, PRESIDENT, LFSA

18:40 18:50

Speakers

Main Session

OPENING COCKTAIL RECEPTION AND POSTER SESSION

18:50 21:30

Main Session

FULL BREAKFAST BUFFET

07:00 08:00

Main Session

SESSION 1: LI-FRAUMENI SYNDROME: THE HUMAN PHENOTYPE (I) - SESSION CHAIR: DR. JUDY GARBER, USA

08:00 10:05

Session Topics

DR. JUDY GARBER, DANA-FARBER CANCER INSTITUTE, BOSTON

08:00 08:25

Single gene vs. Multi-gene panel testing for TP53 germline mutations in Li Fraumeni syndrome

Speakers

Session Topics

DR. GARETH EVANS, UNIVERSITY OF MANCHESTER, MANCHESTER, UK

08:25 08:50

Li-Fraumeni syndrome due to TP53 mutations: UK experience of breast cancer incidence and screening and whole body MRI

Speakers

Session Topics

DR. PATRICIA PROLLA, PORTE ALLEGRE, BRAZIL

08:50 09:15

Variant LFS phenotypes in Brazil: new insights into variant pathogenicity

Speakers

Session Topics

DR. HANY ARIFFIN, MALAYSIA

09:15 21:40

Should the modified Chompret criteria be modified for Asians?

Speakers

Session Topics

PROF. PIERRE HAINAUT, GRENOBLE, FRANCE

09:40 10:05

Tumor patterns, excess risk and cancer genotype/phenotype correlations in germline TP53 mutation carriers

Speakers

Main Session

COFFEE BREAK

10:05 10:30

Main Session

SESSION 2: MODELING LI-FRAUMENI SYNDROME - SESSION CHAIR: DR. JOSH SCHIFFMAN

10:30 11:45

Session Topics

PROF. CHANG CHAN, NEW JERSEY RESEARCH INSTITUTE, BRUNSWICK, NJ, USA

10:30 10:55

Contribution of genetics and stochasticity to variable phenotypes in Li-Fraumeni syndrome

Speakers

Session Topics

PROF. GERRY ZAMBETTI, ST JUDE CHILDREN’S RESEARCH HOSPITAL, MEMPHIS

10:55 11:20

The most common germline TP53 mutation (R33H) is hypomorphic and associated with low tumor penetrance

Speakers

Session Topics

PROF. DAVID LANGENAU, DANA-FARBER CANCER INSTITUTE, BOSTON

11:20 11:45

Modeling p53-deficient cancers in zebrafish

Speakers

Main Session

LUNCH

11:45 13:00

Main Session

SESSION 3: THE UNIQUE BIOLOGY OF P53 VIS A VIS LFS - SESSION CHAIR: DR. DAVID MALKIN

13:00 14:15

Session Topics

PROF. VARDA ROTTER, WEIZMANN INSTITUTE OF SCIENCE, USA

13:00 13:25

p53 loss of heterozygosity in stem cells

Speakers

Session Topics

PROF. IHOR LEMISCHKE, ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI, NEW YORK

13:25 13:50

Session Topics

PROF. VARDA ROTTER, WEIZMANN INSTITUTE OF SCIENCE, USA

13:50 14:15

Opposing roles of wild-type and cancer-related mutant forms of p53 in gene regulation
Main Session

2:15-3:05: SESSION 4: THERAPEUTIC OPPORTUNITIES FOR P53 AND LFS – SESSION CHAIR: DR. MARIA ISABEL ACHATZ

14:15 15:05

Speakers

Session Topics

DR. WAYNE DANTER, CRITICAL OUTCOME TECHNOLOGIES, LONDON, CANADA

14:15 14:40

COTI-2: The discovery and development of a clinical stage small molecule for targeting carriers with p53 mutations

Speakers

Session Topics

PROF. GALINA SELIVANOVA, KAROLINSKA INSTITUTE, SWEDEN

14:40 15:05

Pharmacologic restoration of p53 as a strategy to combat cancer

Speakers

Main Session

COFFEE BREAK

15:05 15:30

Main Session

SESSION 5: THERAPEUTIC OPPORTUNITIES FOR P53 AND LFS (Cont’d) – SESSION CHAIR: DR. JONATHAN FINLAY

15:30 16:45

Session Topics

DR. FARZANA WALCOTT, GEORGE WASHINGTON UNIVERSITY, USA

15:30 15:55

Metformin chemoprevention in LFS

Speakers

Session Topics

DR. JOSHUA SCHIFFMAN, HUNTSMAN CANCER INSTITUTE, SALT LAKE CITY

15:55 16:20

The role of elephant p53 (ep53) in cancer resistance in elephants and its therapeutic potential in humans

Speakers

Session Topics

PROF. PAUL HWANG, NATIONAL INSTITUTES OF HEALTH, USA

16:20 16:45

Targeting mitochondria for cancer prevention in Li-Fraumeni syndrome

Speakers

Main Session

SESSION 6: GENETIC TESTING CHALLENGES – SESSION CHAIR: DR. JEFFREY WEITZEL

16:45 18:25

Session Topics

DR. JEFFREY WEITZEL, CITY OF HOPE, USA

16:45 17:10

When TP53 is not LFS: somatic interference in germline testing and clonal haematopoiesis

Speakers

Session Topics

DR. THIERRY FREBOURG, ROUEN, FRANCE

17:10 17:35

Functional analyzing germline TP53 mutations

Speakers

Session Topics

DR. CHIMENE KESSERWAN, ST JUDE CHILDREN’S RESEARCH HOSPITAL, MEMPHIS, USA

17:35 18:00

Challenges with interpretations of germline variants: examples from the clinic and a call for action

Speakers

Main Session

LFS COMMUNITY DINNER

19:00 21:30

Main Session

CONTINENTAL BREAKFAST

07:00 08:00

Main Session

SESSION 7: PSYCHOSOCIAL/COUNSELING/ETHICS ISSUES IN LFS – SESSION CHAIR: MS. ELIZABETH VARGA

08:00 08:50

Session Topics

PROF. ANDREA PATENAUDE, DANA-FARBER CANCER INSTITUTE, BOSTON, USA

08:00 08:25

Coping with lifelong uncertainty: psychological impact of Li-Fraumeni syndrome

Speakers

Session Topics

MS. ELIZABETH VARGA, MS, LGC, NATIONWIDE CHILDREN’S HOSPITAL, COLUMBUS, USA

08:25 20:50

Navigating the process of genetic testing and screening for Li-Fraumeni syndrome

Speakers

Main Session

SESSION 8: SHORT PRSENTATIONS (FROM SUBMITTED ABSTRACTS) - SESSION CHAIR: DR. GARETH EVANS

08:50 09:40

Session Topics

DR. YUKIKO TSUNEMATSU, JUNTENDO UNIVERSITY SCHOOL OF MEDICINE, TOKYO, JAPAN

08:50 09:00

Characteristics of types of tumors in Japanese TP53 mutation carriers - frequent occurrence of gastric cancer and lung cancer in Japanese kindred with Li-Fraumeni syndrome (LFS)

Speakers

Session Topics

PROF. WENYI WANG, MD ANDERSON CANCER CENTER, HOUSTON, USA

09:00 09:10

The cancer-specific characterization of the Li-Fraumeni syndrome

Speakers

Session Topics

MS.EMILY HILL, SCHOOL OF HEALTH AND REHABILITATION SCIENCES, OSU, COLUMBUS, USA

09:10 09:20

Growing Hope: comprehensive lifestyle intervention increases fruit and vegetable intake and carotenoid status in overweight cancer survivors

Speakers

Session Topics

DR. MICHAEL WALSH, MEMORIAL SLOAN-KETTERING CANCER CENTER, NEW YORK, USA

09:20 09:30

Clinical screening challenges at a time of evolving variant classification standards for LFS patients

Speakers

Session Topics

DR. EMILIA PINTO, ST. JUDE CHILDREN’S RESEARCH HOSPITAL, MEMPHIS, USA

09:30 09:40

Profiling pediatric adrenal cortical tumors

Speakers

Main Session

SESSION 9: TUMOR SURVEILLANCE IN LFS – SESSION CHAIR: DR. SHARON SAVAGE

09:40 10:55

Speakers

Session Topics

DR. MARIA ISABEL ACHATZ, A.C. CARMAGO HOSPITAL, SAO PAOLO, BRAZIL

09:40 10:05

Penetrance, age of onset and tumor patterns in germline p.337H TP53 mutation carriers: an update on the Brazilian Li-Fraumeni syndrome cohort

Speakers

Session Topics

DR. PHUONG MAI, CLINICAL GENETICS BRANCH, NCI, BETHESDA

10:05 10:30

NCI LFS Screening study: Findings at baseline

Speakers

Session Topics

DR. DAVID MALKIN, HOSPITAL FOR SICK CHILDREN, TORONTO, CANADA

10:30 10:55

Beyond the “Toronto Protocol”

Speakers

Main Session

SESSION 10: PROVOCATIVE QUESTIONS AND PRIORITIES: SESSION CO-CHAIRS: OLIVER WYSS (SOCCER FOR HOPE) JENN PERRY (LFS ASSOCIATION)

10:55 11:40

Speakers

Main Session

LUNCH

11:40 12:20

Main Session

DOES DNA = DESTINY? DECIPHERING EVIDENCE-BASED GUIDELINES FOR DIET & PHYSICAL ACTIVITY SPEAKER: DR. COLLEEN SPEES, OSU COMPREHENSIVE CANCER CENTER

12:20 13:20

Speakers

Main Session

A LI-FRAUMENI PREVIVOR, SURVIVOR AND RESEARCH PARTNER SPEAKER: DR. FARZANA WALCOTT, NATIONAL CANCER INSTITUTE

13:20 14:05

Speakers

Main Session

BREAK & SNACKS

14:05 14:30

Main Session

AN OPEN DIALOGUE FOR THE LFS COMMUNITY

14:30 15:30

Speakers

Main Session

NEXT STEPS & CONFERENCE CLOSE WITH DR. JOSH SCHIFFMAN AND JENN PERRY

15:30 16:00

Speakers