How To Raise Money To Get To An Event – Like The LFS Symposium

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

Y’know, like The 4th International LFS Association Symposium, hosted by the Hospital For Sick Children and in partnership with the LiFE Consortium, happening in Toronto, Ontario, Canada, April 25-29, 2018. Yeah, that big event! You want to learn the latest about 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 Toronto – 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.)
      YouCaring
    2. Be specific about the cost: Find out in advance exactly how much it will cost you to fly to Toronto and to stay at the hotel for 5 nights. Set that total amount as your fundraising goal. For example, for me to fly from San Diego to Toronto will cost $342 USD. For me to stay at the Chelsea Hotel for 5 mights will cost $515 USD. So my goal would be 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 to track for your donors.
    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 conference, 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 the LFS symposium.

    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 symposium – but make it easy by making and printing flyers, brochures or leaflets. All those benefits of attending the conference 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 Toronto??

    11. Share, share, share: You don’t have to go it alone in Toronto. The community is coming together to share hotel rooms. Toronto mutants have offered space in their homes to travelers.  And remember, the LFS Association has announced that for LFS families, meals are included at the conference, breakfast, lunch and a dinner! Visit the private LFS Support Group on Facebook to learn more about room sharing options that are already available or to post your own request to share a room.

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 the 4th International LFS Association Symposium, be sure to let us know that in the comments too. We hope to see you in Toronto!


Variants of Uncertain Significance(VUS) in LFS

Few things are more frustrating than looking for answers and getting the response- we don’t know. Sometimes, a person agonizes over the decision to be tested for a hereditary cancer syndrome like LFS, finally getting tested just to know for sure. Unfortunately the results aren’t always a clear cut; Yes, you have LFS or No, you do not have LFS.

There are thousands and thousands of changes that can occur to our DNA, called mutations. Not all mutations are harmful- whether or not the mutations are “bad” is a personal opinion. There are mutations that we just don’t know if they are harmful or harmless, in the case of LFS, we don’t know if the mutation is associated with cancer.  They are called Variants of Uncertain Significance (VUS),  also known as Variants of Unknown Significance (still VUS), or  Unclassified Variants.

IMG_5975

Li-Fraumeni Syndrome is associated with mutations in the TP53 gene. TP53 makes a tumor suppressor, so if the tumor suppressor doesn’t work right, we sprout tumors. There are many spots on the DNA, where mutations can occur. Some change the way the gene works, some do not. Sometimes the gene only works a little bit.  For more reading on mutations and how they affect us, you can read our blog “Some MUTATIONS are NONSENSE“.

When classifying variants (changes in DNA/mutations) there is a scale from 1-5 – Benign to Pathogenic. Benign (B9 to experienced mutants) means not harmful or more importantly not malignant. Pathogenic means to cause a disease- in our case, cancers.

  1. Benign means there is no change caused by the variant.
  2. Likely Benign means suspected to not cause disease.
  3. Uncertain are VUS (Variants of Uncertain Significance) this means there is not enough data to know if the mutation will cause disease or not.
  4. Likely Pathogenic means the variant is suspected to cause disease.
  5. Pathogenic means the variant is known to cause disease.

 

Screen Shot 2017-12-06 at 3.10.17 PM

Genomic Variant Scale from ASHG.org

The American Society of Human Genetics (ASHG) advises that VUS should not be used for decision making, they are neither good nor bad, and all medical decisions should be based on medical findings and family history. This does not mean you are negative for a mutation, it simply means there is a mutation there and that we do not have enough information to momentarily identify what the risk is. The best bet is to consult with a trusted geneticist or genetic counselor (www.nsgc.org) to evaluate your risk based on what you do know – your medical history, your family history, and other relevant factors.

Things to Remember:

You cannot interpret what is not known. Li-Fraumeni Syndrome is rare, we just don’t have the research numbers to know if VUS are linked to cancers. Not everyone with LFS linked mutations get cancer. We know some mutations are linked to certain cancers in LFS but there is still a lot of uncertainty. Participating in studies, such as PROMPT help record data and could help predict if certain VUS might be linked to risk of certain cancers or not.

Focus on what you can control. You can control diet, exercise, and other contributing factors to a healthy lifestyle. Although we can not control mutations, we can try to reduce our risk. A genetic counselor can help you evaluate risk and decide what and if a screening regimen would be good for you. Many people with LFS follow the Toronto Protocol, however, the best regimen is the one that works best for you, your risk, insurance coverage, and lifestyle.

As we learn more, classifications can change. When TP53 was first discovered, it was thought to be an oncogene, a gene that causes cancer. After decades of research, it was reclassified as a tumor suppressor gene. Keeping up with current research can help you advocate for yourself and live LFS.

LLFS Board Member Andi connected with Wendy Kohlmann, MS, CGC, a licensed genetic counselor at the University of Utah Huntsman Cancer Institute. In this excerpt from her interview for the Learning Li-Fraumeni Syndrome podcast, she explains what it means when your genetic test results show a VUS: a variant of uncertain significance or variant of unknown significance.

Like our page to see more segments from Learning Li-Fraumeni Syndrome, a new video and audio podcast presented by Living LFS: https://www.facebook.com/LivingLFS/

Resources and more reading on VUS:

American Society of Human Genetics on VUS

Mayo Clinic pdf on VUS

Think Genetic LFS VUS