How To Raise Money To Get To An Event

So a big event is coming up that you really want to attend, maybe it’s in another state or another country, and your bank account can’t quite handle getting there and staying there.

Y’know, like The First Annual Living LFS Family Camp happening October 10-13, 2019 at Camp Mak-A-Dream in Gold Creek, Montana.Yeah, that big event! You want to learn how to deal with Li-Fraumeni Syndrome and to connect with other mutants, but your wallet has a little of this going on:

empty wallet

Andi Last from Living LFS here with some obvious and not-so-obvious ways to raise money to get you to an event – or to make it a little less expensive to attend:

    1. Crowdfunding: without a doubt, crowdfunding websites are the most common way to raise money online for any good cause these days. GoFundMe and YouCaring are both websites that allow you to create a profile, tell your story and collect donations. Neither site charges a fee to use their platform. Both sites collect a 2.9% + $ .30 per transaction for third party credit card processing through Paypal or the like. (Tip: got a bunch of friends, family, coworkers or community members who all want to donate? Ask them to pool their cash donations in advance to make a single donation, rather than several little ones, so you pay fewer fees.)
    2. Be specific about the cost: Find out in advance exactly how much it will cost you to fly to to the event, and to stay there for the length of the event. Set that total amount as your fundraising goal. For example, for me to fly from San Diego to Toronto for the 2018 LFS Symposium cost $342 USD. For me to stay at the Chelsea Hotel in Toronto for the 5 nights of that conference cost $515 USD. If I had wanted to fundraise to attend, my goal would have been to raise $857. It would only take 43 people donating $20 each to get me to the conference! Giving this kind of info on your fundraising page makes your goal easily attainable and fun for your donors to track.
    3. Be specific about the benefits: Speak straight from the heart. Use your fundraising page to explain to your donors exactly what will happen at the event, why you want to be there, what you will learn, who you will meet, why you want to meet those people, and any other ways your life will change for the better, thanks to your donors!
      The Living LFS Community. One of the best reasons to attend the LFS symposium.

      Meeting the Living LFS Community: one of the best reasons to attend an LFS event.

    4. Put out the call on social media: Now that you’ve set up your fundraising page with the who, what, why, when, how and where, blast it out there! Post it to your Facebook, Twitter, LinkedIn, Instagram, Google+, Tumblr and any other social accounts you may have. Include relevant hashtags like #fundraising #donate #causes #crowdfunding #cancer #hereditarycancer #geneticcancer #raredisease and of course #lifraumeni and #livinglfs just to get you started. Search to find other relevant hashtags that are being used for the event – and even create one of your own for your fundraiser. Ask your social network to help spread the word with a like or comment, or a share, retweet or regram of your posts.
      social media

      Put the call out on social media.

    5. Ask for donations instead of gifts: Check out this list of holidays and observances, choose an appropriate one (like Employee Appreciation Day?) or a silly one (hey, Groundhog Day!) and ask for donations to your fundraising campaign instead of gifts. Don’t forget your birthday or anniversary!
    6. Ask for frequent flyer miles, airline vouchers, buddy passes and credit card rewards: It might not be necessary for your friends, family, coworkers or community to donate money: frequent travelers or airline employees may be able to help you out at little to no cost to them by transferring airline miles or providing buddy passes or airline vouchers. You might even offer to pay any associated taxes or fees. Got friends who are heavy users of credit card rewards programs? Ask if any of their available rewards might be useful to your cause.Airline Frequent Flyer Miles
    7. Make a flyer: There are plenty of opportunities to raise funds in real life, rather than online. When you have the chance, tell people about LFS and about the event – but make it easy by making and printing flyers, brochures or leaflets. All those benefits of attending the event that you listed on your crowdfunding page? Put ’em in your flyer. Keep copies in your car, ask if you can leave a stack in local shops, take them with you to events. And of course, be sure to include the URL to your fundraising page in your flyer!
    8. Sell what you love: Love to cook? Hold a dinner party and request a per plate donation to go towards your travel fund. Photographer? Sell prints of your photos to raise money for your trip. Artist? Sell your work, whether originals, prints, or merchandise, with the profits going towards your fundraiser. Don’t forget to tell your potential buyers about the good cause they’ll be supporting – have those flyers handy.
    9. Sell what you don’t love: Here’s your opportunity to clean out the closet, attic, basement, garage, shed or storage unit and sell anything of value that has been doing nothing but taking up space for too long. My rule: if it’s worth $50 or more, it goes on eBay. If it’s more in the $20-$50 range, it goes on Craigslist (bonus: no selling fees!) Anything less than $20 goes in a garage sale or yard sale. Ask your neighbors, family and friends if they want to contribute their unused stuff to your sale and donate the proceeds to your trip as well. Set a date for the sale, advertise it widely on Craigslist, local classifieds groups on Facebook, NextDoor, and of course, signs around the neighborhood, and get selling. Get closer to your fundraising goal and cut down on clutter at the same time! Win-win! Again, have a stack of flyers on hand to give out to your shoppers.Garage Sale
    10. Ye Olde Bake Sale and/or Lemonade Stand: Why are lemonade or baked goods so popular for fundraisers? Because rare is the person that can resist sweet treats. These sales are great for raising money quickly. Hold your bake sale and/or lemonade stand along with your garage sale, and maximize your fundraising opportunities with a “captive audience!” Again, remind your buyers that all proceeds are going to a very good cause.
      Elephant Cupcakes

      Elephant cupcakes?! What better bake sale item to raise funds to get you to an event??

    11. Share, share, share: At many such events, you don’t have to go it alone. For example, for the 2018 LFS conference in Toronto, community members shared hotel rooms, and local mutants offered space in their homes to travelers and rides from the airport to the event. Visit the private LFS Support Group on Facebook to learn about sharing options that might be available for an upcoming event, or to post your own request to share with someone.

Got any other successful fundraising methods you’ve used to raise money for a good cause? Share them in the comments! If you’re fundraising to get to an event, be sure to let us know that in the comments too. We hope to see you at the next LFS event!

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.


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.


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!


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




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