Connecting the Beautifully Twisted: D’Ana Reed International Scholarship

One Year ago today, we lost a good friend. D’Ana Reed would poke in on the Facebook support group, but she preferred to be with people. She would pack Lola, her trusty blow up mattress in the back of her car and head out to support friends, family and mutants in need. Where Gabby landed was sure to be a good time, complete with karaoke, disco balls and dramatic readings of books, usually with an accent.

Art credit: Inge Vandormael

When her metastatic breast cancer made traveling too complicated, D’Ana(known as Ladybug or Gabby to family and friends) would spend a lot of time Facetiming her crew. She taught my children how to blow straws into their armpits to make fart noises via FaceTime. D’Ana was brilliant and kind and effused life. She conquered years of treatment on her terms. She talked about her DNA being Beautifully Twisted, like her sense of humor. For our Tribute to Gabby, please see the link below.

In Memory of D’Ana Reed. Founder. Mutant. Sister. Friend.  D’Ana and her sister Courtney helped found Living LFS. They soon became our mutant sisters as w…Aug 24 2017www.livinglfs.org

Illonka and her son Kaj

Illonka, a member of our support group, wife, mom and mutant has been an advocate for LFS awareness for years. Her beautiful art piece of her son Kaj, who passed away just a month before his 5th birthday in October 2015, won the RareArtist contest in 2016 and since she could not make the reception in Washington DC, Living LFS sent 2 representatives to accept the award on her behalf.

“Love Never Dies” by Illonka. Winner of 2016 Rare Artist Contest.

In between when Illonka finished chemotherapy for her 3rd breast cancer and her scheduled surgery and reconstruction, fell the 2018 LFS International Conference. WWDD- What Would D’Ana Do? She would go. In order to help make this happen, Living LFS awarded Illonka the D’Ana Reed International Scholarship, because at times like these, being around people who understand is priceless. This is how Illonka was changed by the experience. 

The last week has meant a lot to me, more than I expected in advance. I can barely find the right words to include the last few days. It was overwhelming.

Grateful that I could go and could be, made possible by the Living LFS organization. This 4th INTERNATIONAL Li-Fraumeni (LFS) Symposium in Toronto, Ontario, Canada fell right between my last chemo therapy round and the big operation scheduled for a small week and a half.

I have LFS, a mutation in the TP53 Gene. Elephants have a 5 % chance of dying of cancer in their lives compared to 11-25 % in humans. It turns out elephants have many more p53 copies in their genes. Patients with LFS HAVE 1 Normal Active P53 Gene, healthy people have 2, African elephants have at least 40. What is LFS in ordinary people language? Compared to ‘ordinary’ people, I only have 1 Knight in my body who can compete against any cancer cells that have been created instead of 2 KNIGHTS. There are many different TP53 mutation types. People with this mutation therefore have a greater risk of developing cancer. I’m as they call it ” de novo” aka starter, the first. Which makes me the only “Mutant” in my family. There are many different degrees in LFS. Women with LFS have a 90 % chance of developing cancer and that high percentage is in the breasts. LFS and breast cancer are just a dream. Which immediately explains why I’m currently trying to fight my 3rd BREAST CANCER.

It was an honor to attend the lectures on the latest developments on LFS, and ask questions to the medical community. The Online Living LFS support group is great, but until this week I had never met anyone who has the same mutation as me and kaj.

Living with LFS, living with cancer, and living with cancer constantly lurking is lonely. A lot of people can listen to you, try to be for you and support you, but to really understand it is a difficult task. The scans, the fears, the treatments, the loss, the pain. In the last few days, I’ve been allowed to meet so many brave people who fully understand my struggle. It was incredible to finally meet them. The happy conversations, the fun and the tears we shared. MY LFS FAMILY, my friends, my tribe. I feel grateful and hopeful. Thank you!

#livinglfs
#lfsassociation


A Kick-Ass Kinda Community

 

In April 2018, Living LFS awarded 14 travel scholarships to members of our support group to help them attend the LFSA 2018 REACH International LFS Symposium at SickKids Hospital in Toronto, Canada.

These scholarships were provided by years of fundraising through T-shirt fundraisers and generous donations to our Friends of Living LFS program.

 

Linda and Doug Zercoe were Pathfinder donors, providing a $500 scholarship for one of our members.

 

 

Linda, a huge supporter of Living LFS, penned the heartfelt memoir A Kick-Ass Fairy in 2013.

Linda shared intimate experiences of her journey through multiple cancers and LFS diagnosis. Although Linda wanted to be at the conference in person, treatment for her latest bout with cancer made that trip impossible. Yet, in true Kick-Ass fashion, Linda generously wanted to make sure another member could partake in the benefits of learning about LFS and being around others who get it.  The scholarship became The Kick-Ass Scholarship. Given to the member who exemplifies warrior status, tough of the tough and someone who inspires others to live their best life by kicking cancer’s ass.

The 2018 Kick-Ass Scholarship was awarded to a support group member who has and continues to face the challenges of multiple cancers, their treatments and long term effects with strength, grace, and a whole bunch of hilarity; our friend Row. She inspires all of us daily with her tenacity, humor, and absolute love of life. Where Row goes, there are shenanigans and Toronto was no exception- to the delight of many support group members. Her mere presence was a boost to all and her demand that we finish our long week of learning with a trip to the novelty ice cream parlor, The Poop Cafe epitomizes why she was this year’s recipient of the Kick-Ass Scholarship. When life gives you poop, go out for ice cream with friends.

 

I have had the most wonderful experience over the last 10 days. The LFSA conference was intense, informative and provided me with so much hope for now and the future. This is priceless!

The friends I have met all over the world from online posts to being REAL human beings has made me speechless of just how amazing this really has been. Outside conference I have laughed, laughed and smiled some more. Spent time and shared love, craziness and feelings with friends who truly ‘get it’ is just WOW! I’ve ticked off bucket list items by the bucket load!

None of this would have happened without a wonderful, generous Kick-Ass scholarship from Living LFS provided by a very very special lady Linda. So thank you all for being part of this wonderful 10 days. I’ve had a ball! 💖💖

Linda and Row are sources of strength, support, and inspiration and remind us how fun it is to LIVE! AS Linda told me,

kicking cancers ass is not always in our control. Living our best life while trying or in between is. Raising children, being a friend, etc. is living.