Sep 30, 2017
TRANSCRIPT (links to follow)
This is Episode 8 of Glioblast‑O‑Cast. Did I try crowdfunding?
Hello. Welcome to Glioblast‑O‑Cast, the podcast about my life beyond glioblastoma. I am your host, Meg Turecek.
In this episode I answer the question, did I try crowdfunding? And in my show notes I'll have a list of tips for running a crowdfunding campaign, including some links to crowdfunding websites.
It can be humbling and awkward to put into words when you need help, especially when your world has been flipped around from the reality of a glioblastoma diagnosis. Even with good medical insurance, the financial challenges surrounding glioblastoma can be more than you might be prepared for.
Crowdfunding with many websites dedicated to that is a fairly easy way to receive donations from family, friends, coworkers, neighbors, former or current classmates, basically, people who want to help you with the difficult situation like glioblastoma.
But before you set up a crowdfunding website, it's a good idea to discuss this with your tax preparer to be sure you're not going to have any obligations.
Because you can't always prepare for a catastrophic diagnosis and the associated costs, crowdfunding is one option that, if done right, can be very successful. I ran a campaign at the end of 2016. For me, I was fortunate to not have any financial worries regarding my treatment. But there was something that my circle of people could help with.
Since having surgery, and then going through many weeks of a possible recurrence, I really wanted some family around, but I didn't have the money for international travel, nor did I want to subject my delicate recovering brain to the pressure of flying for ten or more hours.
My sister hadn't been to visit me. And we had talked about, you know, some day she'll come and visit. Well, when you have a diagnosis like glioblastoma and you get scary MRIs, you kind of want some family around. So we planned a fundraiser to cover as many costs as possible for my sister to make the trip. She could help me sort out some things and we would have some fun together.
It was actually a two‑fold treat, as my sister is also a cancer survivor. Her challenge being colon and breast cancer and also being a single mom who hadn't been on a real vacation in years. So this was a really good plan for us. I would get the family support of having my sister visit for five weeks and she would get a trip of a lifetime.
So we set up an account with GoFundMe. There are other platforms, but this one was easy and it worked for us. On my show page, I will have my list of pointers to running a campaign as well as the story we used for ours.
My sister and I had a great time. We were able to discuss some plans for the eventual end of life, but the trip was more than that. It was great to have my sister with me for five weeks to make some new memories, and we got to do some traveling and just have fun.
Our campaign was fully funded in just three days with a couple hundred over the goal of $5,500. I have some highlights of my advice. First of all, make time to manage your campaign. There are so many worthy causes out there these days, and you need to be proactive in publicizing your story. Just putting it out there isn't really enough.
It may help to have someone from your circle who is good at marketing give you a hand. When I ran my campaign, it was important to update as we hit certain milestones. But you don't want to update too often and annoy your circle of friends.
Another point I want to make is it's important to spend time crafting your story. One big point I like to make is that anyone going to your fundraising page will know you're asking for financial support. So it's important to be up front. Don't be shy about how much you're asking for and how you will use the donations.
It's also important to be mindful of formatting your story so that it's easy to read and easy to read quickly. It's good to use paragraphs, bold type, headlines. And a final point I'd like to make is be timely with your thank yous. For me it was easy to send a quick little thank you as soon as I got notified of the donation. That way I wasn't going to have to do it all at once.
If you choose to try crowdfunding, I have one last bit of advice. Don't try to get donations or expect anyone to share your campaign link from glioblastoma or brain cancer groups on Facebook.
Remember that other members are in a similar situation and likely cannot contribute. And they probably won't share your campaign with their network of people. With crowdfunding, I see it as a one‑shot Dole. Pretty much you have just one chance to ask. And other glioblastoma patients need to save their asking for themselves if they decide to go the crowdfunding route.
Thank you for listening. This has been Glioblast‑O‑Cast Episode 8.
Theme music for Episode 008: “Ukulele” Bensound.com
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My Advice on Crowdfunding
Crowdfunding can be a helpful tool in getting through treatment and minimizing the added stress of financial obligations.
I ran a campaign that met its goal of $5,500 in only 3 days 2 hours 42 minutes. Here are my tips for running a campaign.
Where to crowdfund?
Find a reputable crowdfunding site that isn’t dependent on meeting the full goal. Some sites allow you to keep all of the donations, less their processing fee, regardless of meeting your full goal. Other crowdfunding only pays if the full goal is met. I used GoFundMe because of their track record, ease of setup and that the donations would all be available even if the full goal was not met.
Since they had a certain small processing fee, we figured what the amount was that we needed ($5000), and then added an extra amount to cover the fees ($500). I know some people are wary of the fees from crowdfunding sites, but consider that if your supporters were to mail you a check or cash, how much of a hassle that might be to deposit all the checks and money into your bank account. Plus, the crowdfunding sites make the donation process quick and easy, no envelope or postage required.
A selection of potential crowdfunding sites:
Go Fund Me www.gofundme.com
YouCaring & GiveForward (now one group) www.youcaring.com/c/medical-fundraising
Plum Fund www.plumfund.com/medical-fund/
My Cause Crowdfunding for medical bills: surgery, treatment, expenses (Australia) www.mycause.com.au/personal-cause-crowdfunding/medical-bills-surgery-treatment
Writing the Story
Start with a headline that grabs attention and tells what the funds will be used for. Short and to the point, but also eye catching.
Next, have one or two sentences that sums up “The Ask”. This should tell why you are asking for donations and how those donations will be used. People visiting a crowdfunding site already know you will be asking for money. Get it out there straight away. Don’t hide it. Follow proven techniques for reaching your audience.
And realize your audience is not your family or your family, friends, coworkers and neighbors—I’ll call them your core group. They probably already know your story and your financial need. You are NOT preparing your story for them. Your story is for the extended circle that is told about your fundraiser through your core group.
So writing your story should be as if the reader doesn’t know you and you are personally asking them for help. Avoid phrases that make assumptions of the reader’s knowledge of your situation. Don’t use “As you know” type of sentences because your reader doesn’t know yet.
Separate into short paragraphs. There are so many worthy causes out there and if it looks like one big, giant, unending hunk of text, it will look like it’s a chore to read and who has time for that? You want to keep the reader engaged with your story. You don’t want them clicking away before they have finished reading. Little paragraphs are easy to get through.
Format your story like a 7th grade journalism class. Start with the overall statements and work towards more detail. This way, the reader has a good sense of your situation and can stop reading any time and click donate. Or they can continue for the whole thing. But don’t burden them with having to look for the request and your details.
Use headlines and formatting like bold or italic text or underlining. But use it sparingly, for only the important points that can allow the reader to scan and still understand your story.
I wrote my story (which will follow) in sections like a frequently asked questions page. I thought about what I would want to know about a campaign, what questions I would ask. Most people won’t ask the questions that will satisfy their decision to contribute. But if that information isn’t in your story, they might not donate. Be open and honest and cover the details as quickly as you can.
Include pictures, but not too many. Your core audience will want to see who you are, but they won’t want to scroll through more than a couple. I only used a picture of me and one of my sister that I put together into one picture. Since we are far away, I didn’t want to use a photo of us together. Using two separate photos side by side helped illustrate that the goal was for the funds to bring us together.
Managing and marketing the campaign
Update your campaign as you hit milestones. When we were around 50% funded, I added a thank you and request for continued support to meet our goals.
Be thankful and timely. I decided to send a thank you to donors as soon as I received the notification of the donation. GoFundMe has an option to do that. I figured it would be easier to send the thanks right away, which turned out to be good as we had over 60 separate donations. Think how tedious and time consuming that would be to do all at once. Sending them as they happened kept it under control.
And I wrote each thank you from scratch. I didn’t send a pre-written thanks. I felt it was important to make it personal. But for some, it may be easier to write a good, standard thank you that expresses how grateful you are for the donation. I also wanted to include our donors on the adventures my sister and I had, so I asked for mailing addresses so I could send a postcard to our supporters. Not everyone provided their address, but many did and it was a fun thing to do.
Thank you’s don’t have to be long. But they are import. You can even include a request for your donors to share your story with their network.
Be your own first donor. Or get a close friend to donate right away, before you start sharing your campaign. Remember, your audience is made up of donors who don’t know you well. People may wonder why your campaign is stuck at zero funds. There’s a group mentality that no one wants to be the first, but if it’s already gaining donations your audience will be encouraged to help your worthy request. It’s already been validated by the list of donations.
Market your campaign and ASK for people to share your story. It’s called crowdfunding for a reason. It needs a crowd. Using Facebook or other social media is a good first step. But think of other ways, too.
Use your email list and send a short message about your campaign with the link to donate. But be sure that if it’s a mass email, that you don’t include every email in the “To” section. Use the BCC if you do a mass email so that you are not sharing email addresses without permission. Or send individual emails.
Find other ways to spread your news and link to your crowdfunding campaign such as: through your high school or college organizations. Contact your church or community center. Look to former places of employment (that you left on good terms). See if your local grocery store, gym, or favorite restaurant has a community bulletin board.
On Facebook, if you are a member of private glioblastoma or other cancer groups, don’t solicit donations there. All the other members are in the same boat, the same situation. And with crowdfunding, you really only have one shot at asking your contacts for donations. So with others facing the same health financial crisis, they need to save their contacts for their own potential campaign.
Here’s my campaign.
Send me my sister for a month!
The request:
I am hoping to raise the funds to have my sister Amy come to Europe for a month to help me organize my brain cancer situation. I want Amy to help me sort out my end of life, our family mementos that I have that should be shared with my nieces and nephews, and also to have a little bit of final fun together. After all, she’s the first best friend I ever had.
Why Europe:
I have lived in The Netherlands for the past 3 years (more on that later) and considering my diagnosis and current condition, it’s just not wise to subject my brain to the pressure and stress of air travel.
Here’s the situation:
I have Glioblastoma, the worst of the worst brain cancers. It’s super-aggressive and has a very bleak general prognosis. Of course every patient and situation is different, but the odds are pretty ugly. I’ve been dealing with the medical diagnosis and treatment cycle since December 2015 and all of 2016. It’s getting a bit bleak (I will explain more below).
How did it start:
Christmas Eve 2015 I was woken up by paramedics in the bedroom asking me to get myself together and come downstairs at around 3 am. At first, I didn’t understand why we had guests and wondered if I should make a pot of coffee. They asked me questions about how I was feeling and then told me that I had a seizure. I told them no, I didn’t. I was just sleeping. Then they pointed out the thing stuck to my chest. They told me I had a seizure. But that it takes more than one seizure to be Epilepsy. Had I had others? At that moment, my answer was no. But in retrospect, I had had times over the past 3 years where I had unexplained instances of biting my tongue—a typical indication of a seizure.
As you can imagine, I was a bit more than concerned at this event. And the day before Christmas. Not knowing exactly what happened, we still enjoyed a nice holiday with Sytze’s family. I scheduled an appointment with our family doctor for the next available appointment. She told me the same thing. It takes more than one seizure to be diagnosed as Epilepsy. I could wait and see if it happens again. But I wanted to know. I needed to know. So she sent me to a neurologist, who said the same exact thing—more than one seizure to be Epilepsy. But I still needed to know what happened. So she scheduled an MRI and EEG.
Two weeks later, the day before my 49th birthday, I was told there was a legion on my brain. And I can tell you that news really hit me. I’m still not sure how I was able to walk through the hospital to get a mammogram straight away to rule out metastasized breast cancer as the cause. Thankfully, that wasn’t the case. Just a lonely little brain tumor flying solo.
To really explain the impact and significance of the timing, understand that my mother died from Ovarian cancer at the age of 48 after having survived breast cancer five years earlier. I had passed those thresholds and stupidly thought I was free and clear to look forward to a long life. Don’t get me wrong, it’s not over yet. And I have my Mom’s fighting spirit close in my heart. If I could smash and pummel this darn thing, I would give it everything I got. I’ve taken boxing classes.
About surgery, etc.:
The initial tumor was 9 millimeters, so of course I joke that my brain made its own bullet.
I’ve had one surgery in Feb 2016 that left me with an exclamation point of a scar on the back of my head. And an odd haircut. Most people who have surgery for a brain tumor get a question mark of a scar, but because they were able to go in and sneak up on the tumor from the back, I have an exclamation point. I ended up in the hospital a couple extra days because during the surgery I had a collapsed lung that the doctors were able to reinflate.
A couple weeks after surgery when I had healed a bit, we started simultaneous chemotherapy and radiation. We had to stop the chemo early because it really destroyed my blood and lead to two transfusions of platelets and one regular blood transfusion. The platelets were an experience as I had allergic reactions both times and ended up covered in hives for a couple hours. But my blood levels still are below normal and I get worn out after a nice walk around town.
My most recent MRI has indicated that in all likelihood the tumor is regrowing. My doctors cannot confirm 100% without going back in through surgery and they don’t recommend it. In fact, they told me that another surgery would likely leave me paralyzed in some way and that they probably could not remove enough of the offending tissue. The tumor site is buried deep in the center of my brain and the first operation was just super-lucky. It was a very tricky procedure that my surgeon had never done before (though of course he had operated on many brains, just not in this style).
And, they can’t give me the standard chemo because of my past reaction.
And, they say they need to wait a year for possibly more radiation because I’ve already had the maximum amount.
But we don’t know if I have a year. If you Google glioblastoma (and I say try to avoid it because it’s depressing), you’ll find that the average survival rate is just about 18 months or so from diagnosis. I am now at 8 months post seizure incident, 5 months post surgery. But it doesn’t help that it seems to be reactivated so soon.
I’m lucky that I had any surgery at all as well as the chemo and radiation. And I’m lucky to have the time to figure out my “wishes”, which is why I am here. I want to have my sister Amy come for a visit to help me sort out my end-of-life stuff such as what to do with photos and mementos. And, to have a good time. She really deserves it.
Why my sister Amy:
Because she’s been through her own cancer ordeal. Amy is a 5-year colon cancer survivor who was fortunate to have caught it in time to only require surgery. But then she found out that she was positive for the breast cancer gene and had a preventative double mastectomy, all while raising four of the most amazing kids. And without any complaints. She’s a real inspiration to me. But she hasn’t had a decent vacation or getaway in years. So I need her and she needs to come to me in The Netherlands.
Where in the world is Meg:
Now, I’m sure you’re wondering about The Netherlands. I moved to Stavoren, Netherlands, in December 2013 after reconnecting with the love of my life who I met on my journey through Europe in 1988. Sytze and I are so happy to have started a life together after so many years apart. We just fit together. We just never thought we’d be battling this rotten tiny invader and have to make such difficult decisions. We thought we’d have more time together than we seem to be facing at the moment due to my brain cancer diagnosis. But this is the best place for me. Stavoren is the oldest city in Friesland (the area of the Netherlands where we live). It’s less than a thousand people who are all friendly and have embraced me with big hearts.
What about my sister Joy:
I would love to have her here too! But Joy recently had spinal surgery and she is in the middle of recovery. The flight time and connections would not do her recovery any good right now. I have to think about her well-being, too. She needs to be fit for her two wonderful teenagers and super-supportive husband.
Got questions?
I am more than willing to answer anything about my situation for those interested.