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.

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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.

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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!

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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

 

 

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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

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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.

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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


Kelilah’s Keys to “Beating” Cancer and other Crap

Kelilah Vardah gives us her thoughts on the Living LFS question:

“Do some of you think you can beat cancer with pure will (and medicine of course).”

Short answer: In a way, yes.

Long answer: Beating Cancer isn’t easy and there is no clear pathway to survival. Some of the happiest and most positive people I’ve known on my cancer journey have died quickly while there is one particularly mean guy that still hangs around. So, it’s complicated. But we’re used to that, right?

I have fought brain cancer for years. I’ve been sent home to die 3 times and I’m still around. GBM can kiss my patootie. I’ve developed osteosarcoma, which can also go hang out with GBM and there’s a mess of other complicated blah blah blah going on too. Here’s what I’ve learned along the way:

1. First and foremost, be honest. Be honest with yourself every moment of every day and be honest with everyone else too. If it’s a crappy day, then admit it’s a crappy day. Don’t happy your way through the crappy, until you admit the crappy exists and then throw that happy stuff right in it’s face until it cries for mercy. But if you just want to sit in the crappy and fully acknowledge it, DO IT. Don’t hide the crappy from others either. If they don’t know today is crappy, they’ll annoy you with inappropriate happy and you may not get the help you need to get through the crappy. I very recently spent an entire weekend curled up on my bed in utter tearful oblivion and I didn’t get up until I had to make room on my bed for more kleenexes. I didn’t hide it and I didn’t let someone try to “fix me out of it” or even attempt to say there was a single bit of non-crappy in that moment. I owned the crappy for a time. I didn’t die from owning it, cause I’m still here.

2. Don’t let crappy rule you. Let the happy in. Deliberately find reasons that life is fantabulous. The little things are awesome for the especially stubborn crappy days. Be it the trees, flowers or birds that float your boat or simply the fact that chemo doesn’t make us turn neon pink with green stripes that makes you feel a slight bit gratefully happier…. find the little things.

3. Make fun of the crappy. The more we laugh about it, at it, and through it, the smaller the crappy becomes and the more powerful we are in the end. If you can’t find a reason to laugh, recruit one of the most annoyingly funny people you can find to help you out in that area or message me. I’ve always got a good story about the antics I’ve had to endure at my latest doctor’s appointments, or out in town with Mom (I’ll even tell you about the juicy date experience).

4. Remember that cancer exists in our lives but it isn’t our lives. Whether we’re on surveillance mode or we’re full on 007… it is merely existing in our lives. It can’t destroy all that is you, it can only affect what route you take. In the end, make sure that what you leave behind is a wonderful array of stories and memories for those who are left to carry on in life. Make sure to make room for all the stuff they’ll think about, reflect on, laugh over and carry with them into the generations to come. You never know, you may live to a ripe old age and you’ll still have to live in a way that makes your legacy remarkable. The joy in knowing that we are mutants is that we are aware of how much every day counts so much more profoundly than others, so we get a head start on the whole “make it count, make it matter, make it last” side of our story.

5. When you look at what you have around you, you’ll find more will to live than if you think about what isn’t there, what won’t be there, what we need to do and whether we will or won’t be able to get to this or that goal. Appreciate the NOW because that’s where you are. You aren’t in the past and you aren’t in the future and neither is your child, your family members, your friends or those whom you have yet to meet. You are here now. I’m so grateful for that because it is NOW that we get to meet and that may not last but NOW is where we shape tomorrow. Yes, plan for tomorrow but make sure that your NOW makes tomorrow something worth experiencing.

6. Medicine is vital and progress is being made in treatments. Of course it is important but I have one doctor who has never given up on me and has made a great impact in my life. You see, he won’t take anyone into treatment or surgery unless he’s certain that they actually want to live. That they believe they’re going to get a positive result even if it’s not the best result. I didn’t understand that at first but I do now. I learned to tell myself I was going to live and because of that, I’ve had less side effects and less distress and… drumroll… I’ve lived longer with GBM than most who have the same type of tumor. Did it come back? YEP. What did I do? Went back into chemo and bought another wig.

Do I cry? YOU BET…

Do I let people know when it’s a no-good-crappy-horrible-bad day? YOU BET

Do I wonder if I’m going to make it much longer? UH HUH!

I get up every day and make myself move forward. Not because I think I’ll live forever but because I know that today is a day to be honest, to fight with truth, to never let my cancer lie to me and tell me it rules my life, to believe that miracles are still possible… wishes and prayers are valid… and laughter is still one of the best medicines ever.

I found people who won’t let me give up but also don’t push too much, who aren’t going to let me fester in my misery but will refuse to let me ignore it.

And when I couldn’t take the misery of things any more, I grabbed a pile of depends and went through the hospital telling people it was “time for a change”… Ok, so security caught up with me but now all the nurses know me by name grin emoticon.

Good luck, my fellow mutant. Muster your will, gather your wits and join those of us who may be on a sinking ship but we aren’t going down without a heck of a fight and a few good songs about our adventures to pass on to the next generation!

Kelilah VerdahKelilah Vardah is a several time cancer survivor and recently diagnosed mutant and we thank her for letting us publish her inspirational and real thoughts.