This past August, children with cancer experienced another terrific week at Special Love’s hallmark, Camp Fantastic, in Front Royal, Virginia. Camp Fantastic is supported by the Pediatric Oncology Branch of the National Cancer Institute and is staffed by medical volunteers from NCI. Dr. Stephen Chanock, current director of the Division of Cancer Epidemiology and Genetics at NCI, has volunteered and served as the medical director of Camp Fantastic for the past few years.  Your LFSA has also proudly been able to support Camp Fantastic this year with the sponsorship of three campers – children currently undergoing treatment for cancer. Watch the “music video” that Special Love produced from this summer’s week-long program and see all the smiles!!

The post Summer Camp: Special Love appeared first on Li-Fraumeni Syndrome Association.

ISO a volunteer in the Athens, Pennsylvania, area!  Our beloved volunteer board member, Kathy Higgins, will be exhibiting arts and crafts at the Athens Arts4All at the H. Rowe Middle School on May 5 & 6^th, “rain or shine!”  Her table will be set up with a raffle and items for sale, with all proceeds from the weekend to benefit the LFS Association.  It’s also a wonderful opportunity to promote her and her husband’s (Jamie) fundraiser for the LFSA, “’Mo Songs for Kerry,’ to be held this year on July 28^th.  Though this arts festival is being held at a new venue, the local arts fair has boasted attendance as high as 15,000, in the past!  Kathy could especially use help at the table on Saturday, May 5^th.  If you are convenient to Athens, PA, and would like to volunteer your time and have some fun, please contact Kathy at khiggins@lfsassociation.org.

The post Help needed at the Arts4All Festival May 5th in Athens, PA appeared first on Li-Fraumeni Syndrome Association.

On behalf of the Cancer Predisposition Program at St. Jude Children’s Research Hospital, we invite you and your immediate family to our inaugural Cancer Predisposition Family Conference weekend, June 8-10, 2018. The Cancer Predisposition Family Conference was created to bring together families with hereditary predisposition to cancer for a weekend of education, relaxation and fun!

This year’s event will focus on Li Fraumeni Syndrome (LFS) and allow families living with LFS to learn about the latest scientific advances as well as other important issues such as cancer screening, coping, communication and for the young adults – learning how to navigate the medical system and take responsibility for your health care as you march out on your own. Throughout the weekend, there will be ample opportunities to strengthen the connections you have within your own family and create new connections with other families.

Visit link below to learn more:

https://www.stjude.org/education-training/advanced-training/seminars-symposia/cancer-predisposition-family-conference-on-li-fraumeni-syndrome.html

The post Cancer Predisposition Family Conference on LFS appeared first on Li-Fraumeni Syndrome Association.

The LFS Association’s Genetic Counselor Advisory Group is working diligently to establish a genetic counseling directory. If you provide genetic counseling to patients with LFS, and have access to LFS screening protocols (like whole body MRI), please complete the survey below. To our patient families – please “share” to those who care!!

https://redcap.coh.org/surveys/?s=KY7PD8H3RT

The post CALLING ON GENETIC COUNSELORS! appeared first on Li-Fraumeni Syndrome Association.

What is Li-Fraumeni Syndrome? | Dana-Farber Cancer Institute

Dr. Judy Garber, Director of the Center for Cancer Genetics and Prevention at the Dana-Farber Cancer Institute talks about LFS and recent developments in research. Watch the video below!

The post What is Li-Fraumeni Syndrome? Video appeared first on Li-Fraumeni Syndrome Association.

Sunday, October 14, 2018

Ask A Genetic Counselor Webinar

Presentation Disclaimer:
All of the information and materials contained in this presentation, and all materials on the LFSAssociation.org website, are intended for general medical and health information and educational purposes only, and are not in any way intended to be used as a substitute for professional medical advice, treatment or care. Persons who view this presentation are encouraged to discuss any and all of this information with their own physicians. Persons who view this presentation and/or visit the LFSAssociation.org site should in no way rely on any information provided for their own health needs. All specific medical questions which arise as a result of viewing this presentation or any information on the LFSAssociation.org site should be presented to your own physician for review.

The post Ask A Genetic Counselor Webinar appeared first on Li-Fraumeni Syndrome Association.

On Saturday, November 10^th, 2018, LFSA President Jenn Perry addressed the Deaf Cancer Survivors Support Group at Miriam Hospital in Providence, Rhode Island.  Jenn learned how the LFSA can better support any of our community members that may be deaf or are hard of hearing, and the audience learned about LFS and the promising progress in cancer research!  The group is lead by founder Bonnie Abols who is a two-time cancer survivor, as well as deaf – read more about Bonnie’s here.

The post Deaf Cancer Survivors Support Group appeared first on Li-Fraumeni Syndrome Association.

Local: Hospital Sírio-Libanês – IEP – R. Prof. Daher Cutait, 69 – Bela Vista, São Paulo – SP.

Data: 27 de novembro de 2018.

PROGRAMAÇÃO

Manhã

09:00 – Recepção e Registro

09:30 – Abertura do evento (Yasmin Shaaban, LFSA, São Paulo)

09:40 – Atualização na LFS (Dra. Maria Isabel Achatz, LFSA e Hospital Sírio-Libanês, São Paulo)

10:00 – A Nossa Força – The Power of Us (Jenn Perry e Holly Fraumeni, LFSA, Estados Unidos)

10:30 – Entendendo os Testes Genéticos (Dra. Edenir Palmero, Hospital do Amor, Barretos, São Paulo)

11:00 – Fatores Modificadores de Risco para Câncer (Dra. Renata Sandoval, Hospital Sírio-Libanês, Brasília)

11:30 – Câncer Colorretal na LFS (Dr. Benedito Rossi, Hospital Sírio-Libanês, São Paulo)

12:00 – Almoço e espaço para troca de experiências.

Tarde

14:00 – Quimioterapia na LFS (Dr. Rodrigo Santa Cruz Guindalini, Grupo CAM, Salvador)

14:30 – LFS no Sul do Brasil ( Dra. Patrícia Prolla, Hospital de Clínicas de Porto Alegre)

15:00 – Mastectomia em LFS ( Dr. José Bevilacqua, Hospital Sírio-Libanês, São Paulo )

15:30 – Radioterapia na LFS (Dr. Samir Hanna, Hospital Sírio-Libanês, São Paulo)

16:00 – Coffee Break

16:30 – Mesa redonda: Pergunte ao especialistas

Moderadora: Dra. Maria Isabel (médica geneticista)

Debatedores: Dra. Renata Sandoval (médica geneticista), Dra. Patrícia Prolla (médica geneticista),

Dra. Edenir Palmero (doutora em genética molecular) Dr. Samir Hanna (Radioterapeuta), Dr.

Benedito Rossi (cirurgião), Dr. José Bevilacqua (cirurgião), Dra. Maria Nirvana Formiga (oncologista),

Dr. Rodrigo Guindalini (oncologista).

18:00 Encerramento

Apoio: 

Organização: Dra. Maria Isabel Achatz, Dra. Renata Sandoval, Enfermeira Janina Pisani (Unidade de Oncogenética,

Hospital Sírio-Libanês) e Yasmin Shaaban (LFSA)

DOWNLOAD

The post 1o ENCONTRO BRASILEIRO DA SÍNDROME DE LIFRAUMENI – LFS Association Latin American Chapter appeared first on Li-Fraumeni Syndrome Association.

New Study Shows Cost Effectiveness of Early Cancer Surveillance for Patients Who Have a High Risk of Developing Cancer

The post New Study Shows Cost Effectiveness of Early Cancer Surveillance for Patients with LFS appeared first on Li-Fraumeni Syndrome Association.

Unraveling why some people get not one, not two, but many cancers.  The Washington Post interviews LFSA volunteer and LFS patient Noelle Johnson, along with LFSA Medical Advisory Board Member Dr. Josh Schiffman of the Huntsman Cancer Institute.

The post Washington Post: Unraveling why some people get not one, not two, but many cancers appeared first on Li-Fraumeni Syndrome Association.

Sunday, May 19, 2019

Ask A Genetic Counselor Webinar
Talking to Kids About LFS

Download the Presentation

Presentation Disclaimer:
All of the information and materials contained in this presentation, and all materials on the LFSAssociation.org website, are intended for general medical and health information and educational purposes only, and are not in any way intended to be used as a substitute for professional medical advice, treatment or care. Persons who view this presentation are encouraged to discuss any and all of this information with their own physicians. Persons who view this presentation and/or visit the LFSAssociation.org site should in no way rely on any information provided for their own health needs. All specific medical questions which arise as a result of viewing this presentation or any information on the LFSAssociation.org site should be presented to your own physician for review.

The post Ask A Genetic Counselor – “Talking to Kids About LFS” appeared first on Li-Fraumeni Syndrome Association.

Now available!!  “Robot Music:  A Story for Kids with Li-Fraumeni Syndrome and other Cancer Predispositions.”  Sponsored by your LFS Association, Amy Peasgood has co-written with her young daughter, Ruby, a book about Li-Fraumeni Syndrome designed for children aged 4-plus.  Delightfully illustrated, it is a story is about a child navigating cancer risk and surveillance.  The forward is provided by LFS Association Medical Advisory Board Member David Malkin of “The Toronto Protocol” and the Hospital for Sick Children in Toronto.  Proceeds with benefit LFS research and other LFSA initiatives!  Order on Amazon here!

The post Robot Music: A Story for Kids with Li-Fraumeni Syndrome and other Cancer Predispositions appeared first on Li-Fraumeni Syndrome Association.

Help support our 2019 LFSA Youth Conference by buying a square for our upcoming Cow Pie Contest! You do not have to be present at the event to participate and enter for the chance to win. Buy your tickets here!   

The post Play the Virtual Cow Pie Contest and Help Support LFS Youth!! appeared first on Li-Fraumeni Syndrome Association.

The post *NEW* RESEARCH PARTICIPATION OPPORTUNITY appeared first on Li-Fraumeni Syndrome Association.

My name is Emily Berenson and I am a genetic counseling student interested in the psychosocial/emotional impact of the currently recommended Li-Fraumeni syndrome (LFS) cancer/tumor surveillance on both those with a diagnosis of LFS and their family members. With the support of the Li-Fraumeni Syndrome Association, I am conducting an 10-15 minute online survey to learn more about your experiences with LFS tumor/cancer surveillance. Please consider participating if you are over the age of 18 and have a diagnosis of LFS or if you have a family member with a diagnosis of LFS. We also strongly urge you to consider sharing the below survey links with your family members so that they may also have the option to participate in this study. Your thoughts on this important topic are very much appreciated! This study has been approved by the University of South Carolina Institutional Review Board (Pro00091625).

Please use the following link if you have a diagnosis of LFS:
https://uofsc.co1.qualtrics.com/jfe/form/SV_cBEypQQiBrMUha5

Please use the following link if you do not have an LFS diagnosis but have a family member with a diagnosis of LFS:
https://uofsc.co1.qualtrics.com/jfe/form/SV_aVK051GwabcczAh

The post LFS Cancer/Tumor Surveillance Survey appeared first on Li-Fraumeni Syndrome Association.

For Immediate Release

Holliston, MA, February 4, 2020 – The Chan Zuckerberg Initiative (CZI) announced yesterday the Li-Fraumeni Syndrome Association (LFSA) as a recipient of a two-year grant to aid in their work with the Li-Fraumeni syndrome (LFS) community. The LFSA is one of thirty organizations to be awarded a grant for their patient-led approach to supporting community members and financing research for rare diseases.

The grants were awarded as a part of the Rare as One Project, an initiative created by CZI to bring together patients, medical professionals, and the greater medical and advocacy communities to better work towards finding cures for rare diseases. The award recipients were selected from hundreds of applicants from patient-led organizations in a process that began in June 2019. The funds received from this grant will be used to support patient advocates in their efforts to grow their networks, fund research for these rare diseases, and bring together their community from around the world to learn from and with each other through patient driven research.

One of the strongest points of emphasis within the Rare as One Project is the importance of collaboration between recipient organizations to learn from one another how to collectively overcome the unique challenges that face rare disease advocacy organizations. In this new partnership with CZI, the LFSA will be utilizing the mentorship and collaboration portions of the program to develop new strategies for growing their network in the rare disease community, and to better support LFS patients and their families.

LFS patient and LFSA President, Jennifer Perry expresses her sheer excitement to “be selected and afforded the opportunity to learn and grow from this unique collaboration in order to benefit her fellow LFS community members and others facing rare disease diagnoses.” With this in mind, the LFSA is incredibly honored and thankful for the support of CZI in their quest to make a difference and is looking forward to the new opportunities that this grant will bring.

The Li-Fraumeni Syndrome Association is a 501(c)(3) certified organization that provides information, advocacy, and support services for individuals and families with Li-Fraumeni syndrome, a genetic predisposition to multiple types of cancers, often rare, and often early-onset. Childhood cancer is often associated with an inherited susceptibility, and LFS is one of the most significant cancer predisposition syndromes. The organization also raises funds to further cancer-related research and promote optimal care for the LFS community. For more information about the LFSA, please visit www.lfsassociation.org.

The full press release announcement from the Chan Zuckerberg Initiative can be found here.

For more information, please email LFS Association.

The post Chan Zuckerberg Initiative Awards Grant to the Li-Fraumeni Syndrome Association appeared first on Li-Fraumeni Syndrome Association.

A Message from the LFS Association

Dear LFS Family,

I wanted to personally reach out to you as the Coronavirus (COVID-19) continues to affect our lives around the globe. This virus (like many before it), is unbiased, it doesn’t play favorites, and impacts each one of us, no matter where we live, work or call home.

All of us at the Li-Fraumeni Syndrome Association take safe-guarding our community extremely seriously. The well-being of every patient, family member, medical professional, and our board and committee members, is our utmost priority. Similar to many organizations around the globe, we are postponing any travel and attendance to any related events for our committee and board members. We are taking advantage of virtual meetings and convenings to ensure our work and mission continues.

We are blessed to have the best physicians and genetic counselors from around the world. They are here to support our community with various resources if the need should arise, and ensure our patient community and their families are as safe as possible until this threat of COVID-19 dissipates.

Here are a couple of key considerations:

If anyone needs to be connected to a professional, please don’t hesitate to reach out to us at info@lfsassociation.org at any time, and we will assist in every way possible.

Please know that we will continue to stay vigilant and monitor any continuing developments in order to best evaluate any potential impact to our LFS community. We will update you all when appropriate. Your health and safety is always at the forefront of our hearts and minds, and we will do everything in our power to safeguard it.

On a positive note, our symposium in the fall is full steam ahead as we anticipate life to be back in the regular routine of things by October. This will certainly be a special time where we can count our blessings to be together again, a place where we can enrich our minds and souls, and connect personally once more.

Until we meet again ­– stay healthy in body and mind, connect with those you care about around the world with phone calls, Skype, FaceTime and social media. Remember, connecting is more than just a handshake and a hug!

Take care and as always…“Use your smile to change the world; don’t let the world change your smile.”

Jenn Perry
President/Co-founder & Patient
Li-Fraumeni Syndrome Association

Watch the Li-Fraumeni Syndrome & COVID-19 Webinar

COVID-19 Information & Resources

National Cancer Institute:  https://www.cancer.gov/contact/emergency-preparedness/coronavirus

World Health Organization:  https://www.who.int/emergencies/diseases/novel-coronavirus-2019

Centers for Disease Control and Prevention:  https://www.cdc.gov/coronavirus/2019-ncov/index.html

Stress Coping Resources for COVID-19

Centers for Disease Control and Prevention –  identifying stress and tips for coping

YouTube – source for free workout videos, including yoga and HIIT workouts

Down Dog App – apps for yoga, barre and HIIT (free deals through 5/1, which may extend in the future)

Insight App – free meditation app, includes newly uploaded videos about how to deal with stress and anxiety relating to COVID

Headspace App – meditation app that includes some free content for coping with COVID

Buddhify App – meditation app

Talkspace App – connects you with a therapist remotely (does require payment)

The post COVID-19 and the LFS Community appeared first on Li-Fraumeni Syndrome Association.

Friday, March 27, 2020

Li-Fraumeni Syndrome & COVID-19 Webinar

The LFS Association and Dr. Joshua Schiffman from the Huntsman Cancer Institute host a special webinar for families with Li-Fraumeni syndrome to share insights on the COVID-19 virus and how it affects the LFS community.

Guest Panelists Include:
Joshua Schiffman, MD, Professor of Pediatrics, University of Utah and CEO of PEEL Therapeutics
Luke Maese, DO, Assistant Professor of Pediatrics, University of Utah
Wendy Kohlmann, MS, CGC, Genetic Counselor, Huntsman Cancer Institute, University of Utah
Jennie Vagher, CGC, Genetic Counselor, Huntsman Cancer Institute, University of Utah
Kara Maxwell, MD, PhD, Assistant Professor of Medicine, UPenn

Panelists address questions and concerns about the coronavirus and its impact within our community.

Presentation Disclaimer:
All of the information and materials contained in this presentation, and all materials on the LFSAssociation.org website, are intended for general medical and health information and educational purposes only, and are not in any way intended to be used as a substitute for professional medical advice, treatment or care. Persons who view this presentation are encouraged to discuss any and all of this information with their own physicians. Persons who view this presentation and/or visit the LFSAssociation.org site should in no way rely on any information provided for their own health needs. All specific medical questions which arise as a result of viewing this presentation or any information on the LFSAssociation.org site should be presented to your own physician for review.

The post Li-Fraumeni Syndrome & COVID-19 appeared first on Li-Fraumeni Syndrome Association.

Monday, June 29, 2020

Forging a Path Towards Resilience and Cultivating Greater Happiness Webinar
Gina Vild, Author

A conversation surrounding the topic of resilience with author Gina Vild. Vild is the co-author of The Two Most Important Days – How to Find your Purpose and Live a Happier, Healthier Life and is currently writing her second book about resilience. As we navigate these times of uncertainty, resilience becomes an important factor in maintaining our sense of happiness and health. During the webinar, Vild discusses ways in which the LFS community can harness the power of resilience and take important steps to create a happier and healthier life.

Gina Vild most recently served as Associate Dean and Chief Communications Officer at Harvard Medical School, and she has held leadership roles in the health care and government sectors. She is also a contributor for Psychology Today.

Recommended Reading:
The Wild Edge of Sorrow: Rituals of Renewal and the Sacred Work of Grief
by Francis Weller

Levels of Life
by Julian Barnes

Man’s Search for Meaning
by Viktor E. Frankl

The Feeling Good Handbook
by David D. Burns

The Two Most Important Days: How to Find Your Purpose – and Live a Happier, Healthier Life
by Sanjiv Chopra, Gina Vild

Presentation Disclaimer:
All of the information and materials contained in this presentation, and all materials on the LFSAssociation.org website, are intended for general medical and health information and educational purposes only, and are not in any way intended to be used as a substitute for professional medical advice, treatment or care. Persons who view this presentation are encouraged to discuss any and all of this information with their own physicians. Persons who view this presentation and/or visit the LFSAssociation.org site should in no way rely on any information provided for their own health needs. All specific medical questions which arise as a result of viewing this presentation or any information on the LFSAssociation.org site should be presented to your own physician for review.

The post Forging a Path Towards Resilience and Cultivating Greater Happiness appeared first on Li-Fraumeni Syndrome Association.

Hello,

My name is Colin Bixler and I am a student in the Master’s in Genetic Counseling program at the University of Maryland School of Medicine. I would like to invite you to participate in a research study.

The goal of this study is to evaluate coping strategies used by parents of children diagnosed with Li-Fraumeni syndrome (LFS). We hope this research will help providers better understand the coping strategies used by parents and the factors associated with improved coping.

Parents or guardians who have at least one child diagnosed with LFS are eligible to participate. Participation consists of an anonymous online survey that should take about 15-20 minutes to complete. We will ask you questions about your child/children’s diagnosis, how you have dealt with this diagnosis, and some general information about you.

Participation in this study is voluntary. You will not directly benefit from participating in this study. There is a small chance that a question may make you feel uncomfortable. Your decision to participate or not to participate will not affect your child’s medical care.

If you have any questions or concerns about this study, please contact Shannan Dixon, the study director, at sdelany@som.umaryland.edu or 410-706-4713.

If you have any questions about participants’ rights as they relate to this research, please contact the Human Rights Protection Office (HRPO) for the University of Maryland at 410-706-5037 or hrpo@umaryland.edu.

Click the link below by December 1st, 2020 to be taken to the survey:

https://umaryland.az1.qualtrics.com/jfe/form/SV_d7olQlR6dI3A1lb

Thank you for your time.

Sincerely,
Colin Bixler
Master’s in Genetic Counseling student
University of Maryland School of Medicine

Shannan Dixon, MS, CGC
Director, Master’s in Genetic Counseling Program
University of Maryland School of Medicine

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