LFS Association

We are families, like you, who have been devastated by the effects of Li-Fraumeni syndrome, a hereditary cancer predisposition syndrome.

[LFS Association @LFSAssociation]

The LFSA mourns the loss of Dr. Joseph F. Fraumeni, Jr. (1933 - 2026), one of the world’s premier cancer epidemiologists. His remarkable and vast contributions have forever shaped cancer research worldwide and his role in founding LFSA was pivotal for advocacy and patient support.

[LFS Association @LFSAssociation]

Joseph F. Fraumeni, Jr., M.D.
1933 - 2026

[LFS Association @LFSAssociation]

Tuesday 6/16! Sign-up at https://t.co/v0GBZsQDiR to hear insights from Dr. Asaf Maoz of @DanaFarber about Gastrointestinal Cancers in Li-Fraumeni syndrome, including cancer risk, screening approaches, symptoms to watch for #lifraumeni #lifraumenisyndrome #colorectalcancer

[LFS Association @LFSAssociation]

Join the 2026 effort this summer! Walk your neighborhood, hike a favorite trail, bike with friends or create a challenge of your own – every mile and every dollar moves the mission forward.

Climb fundraising directly supports REACH26, the 8th International LFS Association Symposium connecting families, researchers and clinicians from around the world to share knowledge, spark collaboration and accelerate progress for Li‑Fraumeni syndrome. Learn more and create a team at https://t.co/D8iNKnc3ov

[LFS Association @LFSAssociation]

Sign up here https://t.co/UzpYd7i5qZ for next week's webinar to hear insights from Dr. Asaf Maoz of @DanaFarber about Gastrointestinal Cancers in Li-Fraumeni syndrome, including
-Recent research on cancer risk
-Current screening approaches
-Symptoms to watch for
#lifraumeni #lifraumenisyndrome #colorectalcancer

[LFS Association @LFSAssociation]

LFSA board secretary Erica K. recently got a tour of the oncology research lab at @FoxChaseCancer in Philadelphia led by Dr. Margie Clapper, an internationally recognized leader in #cancerprevention research and @NCICAPIT FCCC Principal investigator (Cancer Prevention-Interception Targeted Agent Discovery Program).

A goal of the FCCC CAP-IT Center is to develop precision cancer prevention and early interception in populations at high risk for cancer. Erica had participated in a patient panel at the CAP-IT Summit in March and this month's follow-up lab visit included a look at #p53 tissue samples from a current study.

[LFS Association @LFSAssociation]

Recommendations of LFSA Medical & Scientific Advisory Board on whole-body MRI and connections with specialists & patient resources are sourced in @observer_voice.
Please continue to share this guidance & LFSA resources to help inform medical professionals and support families impacted by #LiFraumeni syndrome. https://t.co/11z25EZ6HN

[LFS Association @LFSAssociation]

Dr. Payal Khincha, pediatric hematologist oncologist and physician scientist at @theNCI, joins us for a webinar on Thursday (5/21) to discuss:
☑️Understanding the performance of cancer screening
☑️Evaluating effects of treatment on subsequent cancer risk
☑️Psychosocial impacts of LFS on individuals and families
Dr. Khincha leads the NCI’s long-running Clinical, Genetic, and Epidemiologic Study of families with LFS and will share insights from her work, including cancer surveillance strategies, risk characterization and treatment considerations.
Sign up now at https://t.co/lZ5HEDYENj

[LFS Association @LFSAssociation]

Reminder! Sign up at https://t.co/tVlb715d2M for today's 11:00 AM Eastern webinar to hear about new & upcoming LFSA tools, including:
✅ Whole-body MRI and screening resources for insurance coverage
✅ Medication savings searchable database
✅ Interactive tools to help adolescents and young adults self-advocate
✅ Info sheets to inform medical providers about LFS

Hosted by Genetic Counselor Advisory Group co-chair Megan Frone of @theNCI and LFSA co-founder/president Jenn Perry. #lifraumeni #lifraumenisyndrome

[LFS Association @LFSAssociation]

Identify and maximize info & updates, from the latest in research & #screening recommendations to practical guidance on insurance/financials, common #lifraumeni terms and FAQs. Sign up at https://t.co/tVlb715d2M

Hosted by LFSA Genetic Counselor Advisory Group co-chair Megan Frone, MS, LGC @theNCI and LFSA President Jennifer Perry.

[LFS Association @LFSAssociation]

Today, on Intl. Li-Fraumeni Syndrome (LFS) Awareness Day, join us in a month dedicated to connection, education & action.
Share social media posts to help spread lifesaving awareness, consider starting or supporting a fundraiser to benefit LFS families & critical research. Encourage genetic testing. One conversation could change the future for an entire family!
Family resources are available at https://t.co/Op23f3whAb

[LFS Association @LFSAssociation]

Another @ChildrensNatl LFS Family Day highight, presentation by LFSA Medical & Scientific Advisory Board members David Hoyos, computational biologist @MSKCancerCenter & Arnold Levine, PhD, Prof. Emeritus, Institute for Advanced Study, Princeton. #lifraumeni #lifraumenisyndrome #p53 #hereditarycancer

[LFS Association @LFSAssociation]

LFS Family Day at @ChildrensNatl this weekend included an incredibly informative panel to address patient questions on #LiFraumeni syndrome. Thanks to all of the participants & families for joining these important conversations.

[LFS Association @LFSAssociation]

LFSA board member Erica Kirschner provided valuable insights lastmonth as a patient advocate at #CAPITSummit @theNCI

[CAP-IT @NCICAPIT]

#CAPITSummit kicked off at 8:45 AM ET at the NCI shady grove. Dr. Shizuko Sei introduced the patient advocates, and Dr. Leslie Ford delivered the opening remarks.

[LFS Association @LFSAssociation]

Families in the DMV area, please join us together with @ChildrensNatl for #LiFraumeni syndrome family education day on April 18. Details/register at https://t.co/39tgkIZXHJ

[LFS Association @LFSAssociation]

We are honored to announce the establishment of the Katherine M. Howley Endowment Fund for Li‑Fraumeni Syndrome Research. This generous gift will allow the LFSA to award biennial research grants of up to $50,000 to the best and brightest minds in science who are working to discover and implement accessible methods of early diagnosis, treatment, and eventually a cure for #LiFraumeni syndrome (LFS).

Please learn more about Kate and her meaningful legacy: https://t.co/uteA41lAUw

[LFS Association @LFSAssociation]

Today is recognized as Rare Disease Day - a global initiative to raise awareness and generate support for everyone who is on a rare medical journey.

At LFSA, we advocate for Li-Fraumeni syndrome awareness because we know we're not rare! Today we honor all of the faces of LFS and their families and we offer support for their journeys.

Visit https://t.co/M8mZubClxI for resources or reach out to us at [email protected].

#RareDiseaseDay #lifraumeni #lifraumenisyndrome

[LFS Association @LFSAssociation]

LFSA's Jenn Perry recently attended #SU2CInnovationSummit poster session sharing the work of David Hoyos, a member of our Medical & Scientific Advisory Board and computational biologist at @MSKCancerCenter.
His research utilizes statistical physics to help predict TP53 associated cancer phenotypes in #LiFraumeni syndrome cancers. Developments like these are working to enable the use of targeted therapies, such as #immunotherapy, against specific cancer mutations.
LFSA is proud to support this incredible work and collaborate with organizations such as @SU2C to improve the lives of those impacted by LFS.

[LFS Association @LFSAssociation]

LFSA president Jenn Perry got the chance to meet Nobel Prize-winning scientist Phillip Sharp, whose discovery of RNA splicing reshaped science, medicine and the global tech industry. His story was captured in a fascinating documentary shown last night at @SU2C Scientific Summit 2026.
Watch CRACKING THE CODE: Phil Sharp and the Biotech Revolution: https://t.co/LSfMSNXbb2