Thank You from Jen.

5 years ago, I learned my Breast Cancer metastasized. I was terrified, angry, but not surprised. A close group of friends I met through the LFS Support Group reassured me that this was not the end, it was a beginning. We met for the first time in person November 2013, in the bar of the Longwood Hotel, Boston. We were the unruly gigglers in the back two rows of the LFS Conference. We reached out to others on breaks, letting them know about our online support group. We shared laughs, tears, stories of hope, stories of loss. We were going to live LFS together, and help others along the way.

I had been to the first LFS conference in 2010 at the NIH. The experience was overwhelming, thrilling, and life changing. I met Dr. Joseph Fraumeni. I absorbed the science like a sponge.  I met lifelong friends there, like John Berkeley, the first President of LFSA. We tried to navigate setting up a nonprofit for LFS while constantly cancering. We teamed up with others, like one of my best mutant friends, Trishia. So much to be done: awareness, advocacy, support, RESEARCH! Yet, it was 3 years later at the bar in Boston, through snarky jokes, expletives and many beverages, a smaller group of constantly cancering mutants decided to focus on the living and the need for support. Living LFS was born based on our values as a misfit group of mutants, with the hope of including all. We offered more than “just support”. We helped others meet up. I became President of this non-profit, with good friends and fierce advocates by my side. Living LFS is my Tribe.

 

In the past 5 years, Living LFS has been my focus. The women who started it with me, my sisterhood of traveling mutants. We laugh at inappropriate things and use the term mutant with the highest regard and endearment.  We set lofty goals – regular meetings, conferences, telling stories about LFS to raise awareness, advocating to helpothers live their best possible life with LFS. From each one of my living LFS sisters, I’ve learned valuable lessons that made my life better. I could not have gotten through the past years without them and you. We are all Living LFS.

 

Over these years, every single one of our board members dealt with cancer personally. There was very little medical quiet for any of us, yet we knew we were not alone. Growing up in a cancer family when there was very little support, it is very important to me that others have options for support.  I am grateful for the professionals who work so hard to help find our families better screening, treatments, and hopefully a cure. I believe whole heartedly in the need for advocacy and awareness. I also know the fear and loneliness that accompanies being diagnosed or living in a family with a hereditary cancer syndrome like LFS. It is overwhelming and frustrating to reach out for support to find there is none.

 

I know what it is like to live where there are not a lot of resources for families with cancer. I know what it is like to have to teach professionals how to spell Li-Fraumeni and pronounce it. I’ve been walked through clinic halls like the rare specimen. I’ve debated risks and benefits of screening and treatments until my brain hurt. (It was not a toomah!) I’ve taken the opportunity to talk with baby-docs and residents about LFS and being a parent of a cancer kid. I’ve spent months calling to schedule appointments, fix billing issues and know friends who have rooms full of paperwork that needs follow up.  Through it all, the most resilient people I’ve met are those living LFS.

 

I know what it’s like to walk into a room full of people and feel absolutely alone until another mutant starts chatting and it’s like you’ve known each other your entire lives. I’ve wished and prayed for B9 for more biopsies on more friends in our support group than most people do in their lives. I’ve laughed at poop jokes and crazy medical happenings and the occasional funeral story. I’ve cried with friends out of fear and loss. I’ve compared scars and chemo craziness.  I’ve been hugged so hard I know broken pieces stuck back together. I’ve learned so much over these years, way more than I shared.  I know there are others like me and I am not alone.

I cannot possibly thank every individual here who gave me back confidence when I doubted, picked up the reins when they fell and guided the team with our mission, towards our vision. To each person who sought me out for a hug, who champions for so many different cancers we face, for our children. For those who do it quietly and do the things no one else wants to do, I see you, thank you.  I must give a huge Thank You to Greg Harper for accepting the nomination to take over as President of Living LFS. He  already dedicates so much time and energy to our community, I am excited to keep working with him on upcoming support initiatives. Like previous founders and board members, once you are living LFS, always living LFS.  I am not leaving, but I need to focus on some personal things – and I can do that, knowing the organization is in good hands.

It is time for me to share Living LFS. Although I am stepping down as President, there are so many good things ahead for us and I will always be a part of the organization. To each and every new friend I’ve made through living LFS, thank you. For giving me support, personally and professionally. For every T-shirt sale, donation, fundraiser, card. Thank you for your time, your kind words, late night calls, messages, long distance visits and shared experiences. Thank you. For helping me create something special. Thank you for helping me LIVE.

 


The REACH 2016 International Li-Fraumeni Syndrome Conference

IMG_5522 On Wednesday, June 1st, 2016 the LFS family gathered at the Sheraton Capitol Square in Columbus, Ohio. This family includes people with TP53 mutations, those who love someone with a TP53 mutation and the researchers and doctors who have spent decades helping us live LFS. The Li-Fraumeni Syndrome Association graciously organized and sponsored the event with help from several organizations that continually advocate for our LFS community. By setting the precedent of working together towards a common goal, the 2016 REACH International LFS Conference presented by Soccer for Hope was a huge success.

IMG_5759

When LFS Reseachers and families met for the very first time at the NIH LFS Conference in 2010, the overwhelming reaction was, why did it take this long to do this? Clinicians and patients interacted sharing stories and news. Patients came away with renewed hope that there were dedicated friends working diligently to help them fight LFS. Researchers and clinicians got to interact with patients and hear not only how LFS impacted them, but how important their research was to us. These scientists formed the LiFE Consortium, while many patients banded together to form the Li-Fraumeni Syndrome Association and these two groups hosted the first LFSA Conference in Boston. It was at this meeting in Boston where members of our Facebook Support group came together and eventually formed our nonprofit patient support organization, Living LFS. Together we all work towards a common goal for the LFS community in very different ways. The LiFe Consortium are the researchers, the doctors, the clinicians who are committed to finding as much as they can about LFS.  The LFSA works closely with the LiFE Consortium to promote an increased understanding of Li-Fraumeni Syndrome (LFS) and foster scientific advancement that will improve the lives of those living with LFS. We the troops on the ground, are Living LFS- we are the support groups, the late night friend online, the day to day sharing of experiences and lessons learned while navigating this syndrome. Just as the previous conferences made a huge impact on our rare community, so did this one.

IMG_5756

Nina shares what makes her LFS Strong.

The 3rd Annual LiFE Consortium and LFS Association Conference was my first conference after learning about my TP53 mutation. I am amazed at the amount of work that helped this event take place, let alone the abundance of information that was presented. The conference taught me a great deal about the current research being conducted regarding Li-Fraumeni mutations. Moreover, it brought me closer to people who understand what I am going through, something no one in my family can even relate to, since I have a de-novo mutation. This conference gave me hope for the future, and a better understanding of what trials may be available to me in due time. I can not even begin to explain how appreciative I am to have been given the opportunity to attend, but also to feel more confident living with LFS on a daily basis. I hope that there are more conferences as the years progress, because I believe they are a rewarding experience for anyone living with a Li-Fraumeni mutation. Knowledge, hope, friendship, and love are gained for all those that attend! -Nina 

The Conference began with a meet and greet Wednesday and 2 very full days followed of presentations from researchers, doctors, and LFS patients from around the world. There were coffee breaks where patients hugged and introduced themselves to scientists whose work inspired them and gave them hope. We got to meet some of the sponsors of the conference and share our thanks. The community truly came together. The weight and devastation that LFS can bring felt a little bit lighter with so many friends gathered to carry it. Presenters were eager to talk to each other and the people their work so profoundly impacts. Dr. Joshua Schiffman enthralled us with his tales of elephants and how a trip to the zoo is changing the face(or trunk) of p53 research. Dr. David Malkin shared updates of the Toronto Protocol and insights on screening and new directions.  Professor Varda Rotter even changed her presentation after spending time talking with families. She wanted to make sure that the patients in the room could understand her work and p53. Patients were inspired to volunteer for trials and learned that participation really makes an impact for our community. In the upcoming weeks, we will share some of the information we learned here, in bite sized chunks!

IMG_5764

Dina with her team from the NIH.

I would like to thank the LFS Association for their dedication and assistance in making a memorable weekend for me and many. The warm welcoming and wealth of info involved in the weekend was so worth the drive and time to attend. Seeing real people and hearing their stories have an understanding that this is a group huge effort. Wealth of knowledge from professionals from ALL around the world who are important to a cure …. made me feel I too was important to finding a cure!!! I am NOT happy what LFS has done to my family or me, yet happy I have met a sweet support system!! The fear is real, yet the LOVE is stronger ..LOVE WINS! Some how.   Some day we will have a way to WIN! -Dina

 

 

IMG_5566

On Thursday night, families gathered with sponsors and several clinicians for a delightful dinner host
ed by Myriad Genetics. The chicken dinner and collection of desserts was almost as delicious as the laughter that rang around the room. A selfie stick at each table and a photo booth in the corner helped everyone capture memories of the night.

 

 

The conference was beyond what I imagined. It can be summed in the following words I felt:
Awesome, Informative, emotional, interesting, hopeful, understood, family, grateful, fun, wonderful, hugs, compassion, friendships, comforted, delicasies, tears, joy, happiness, fellowship, laughter, goofyness, pictures, touched, loved, sharing, kindness, human, and most of all life changing.
Thank you so much for making it possible for me to attend. What a wonderful group of people to be with during my immense time of loss and grief because of this monster called LFS.
Words cannot describe my gratefulness. Thank you from the bottom of my heart!  -Shoonu

steph shoonu susan

Stephanie, Shoonu and Susan are all smiles to finally meet.

Living with LFS is a challenge. There are emotional, physical and financial burdens associated with having a hereditary cancer syndrome. Often times people with LFS feel alone. It truly takes a village to care for an LFS family- a village of friends, doctors, researchers and advocates. Support Groups online help ease the loneliness on a daily basis, but the international cooperation of a conference like the REACH 16 International LFS Conference offered an invaluable opportunity to be surrounded by love, knowledge, strength, hope and advocacy. Attendees travelled from all over the world to be there.  Over 20 scholarships were funded to help people attend the conference and family members could attend without having to pay a registration fee. Living LFS was able to offer financial aid to 3 support group members who were kind enough to share what they gained from the experience for this post.

Toronto LFS 2017

Mark your Calendars and get your passports ready for the next LFS Conference!

The LFSA spearheaded the conference and it would not have been possible without their hard work, collaboration with other organizations and the many generous sponsorships offered. The LFSA,  Soccer for Hope, Nationwide Children’s, The Ohio State University, Myriad Genetics are just some of the organizations that helped fund and support this wonderful event. We as families are truly grateful and are marking our calendars and getting our passports ready for October 2017 in Toronto, Canada for the next International LFS Conference. We send heartfelt thanks to each and every person who helped at this event and we look forward to seeing them again next year as well as many new friends.

REACH 16 Sponsors