While I had some free time I was exploring how best to start raising funds for my transplant. The reality is even if I’m not listed right away I will need to get some funds coming in.  I am a big fan of crowdfunding as a general rule. I’ve backed some interesting projects, games, & technologies on both Indiegogo & Kickstarter.  I’ve also helped fellow LAM sisters, classmates, volunteer friends, & other people from my community with donating to sites like GoFundMe or JustGiving as well for personal catastrophes & to pay down medical expenses or obtain services & equipment not covered by an insurance policy.  But here’s yet another reason why I started narrowing the focus of my blog to detail the unique challenges stemming from being unmarried…this was the first real eye-opener I had to in looking to see how to finance my transplant.

I mainly did this homework because I felt it would prepare me to have an honest conversation about finances with the financial coordinator who I will be meeting with during my evaluation.  Even if I am not actively listed right away, I need to start planning for the future & to make this fund sustainable for as long as the process will take from evaluation to listing, to waiting, to transplant, to after-care.  I am fortunate to have good insurance but it will not cover everything. I’m still paying off medical expenses from past issues & past insurances that weren’t as good.  Having two rare & chronic diseases to manage  those dollars add up fast & can plague a person for several years, even if it’s just high deductible expenses which are legitimately owed.

I’m a big fan of lists to expound on points I try to make. Here’s my list of why I am not using crowdfunding as a fundraising method.

1. The percentage.  On each donation GoFundMe takes at least 5 percent off the top for hosting & allowing you to create a site. I realize they have to do this, but I was seeking out sources that might have a smaller percentage.  There are few transplant organizations that may take this much out or a little less but they also provide additional support, by means of helping promote, printing up fliers & setting up a trust; so utilizing nonprofits pays off in dividends as to why they command the percentage of what they do. It’s more than just hosting a page & collecting donations.

2.  The donations are not tax-deductible.  Volunteering for non-profits as I have and giving as I do, I don’t mind forfeiting 10 or 20 dollars here or there to help an individual out, but something more substantial I really would like credit for on my taxes when I file.  I know others would appreciate this too,  & maybe would give more if I use an actual organization that specializes in helping raise funds for this type of situation.  HelpHopeLive is one such organization that does that.  Those donations are tax-deductible. A few other organizations I’ve also looked into that offer these services will also send acknowledgement letters for certain dollar amounts that people can show as proof of donation.

3.  When I use a site like GoFundMe, the donations are considered income.  This is a catch-22 in my instance because when I am seeking out services like disability, SSDI, Medicaid, or income-based reductions on medical bills, this could affect my chances of obtaining it.  I get unrestricted use of the funds, not just solely for medical but house or financial emergencies but then I still have to claim it on my taxes & report it elsewhere even if it’s going to pay medical bills.  This is hard when I file a single return & am a sole wage earner.  Everything counts.   Whereas, if I use a nonprofit entity they pay my providers, or my insurance company directly for COBRA premiums, medical bills, or whatever medical related expenses. It does not count as income.

4. Access to grants. I noticed with these nonprofits, they often provide a few helpful & useful grants that come in handy after transplant, which is just as important as trying to map out before or while I’m listed. HelpHopeLive provides an additional grant at the 10,000 level & 20,000 level. They also help find access to programs that can coverage mortgage payments for up to 3 months after the transplant, which is extremely helpful considering the amount of visits involved after the few months after discharge from the hospital.  They also do strive to work with financial coordinators at the hospital which can be a huge asset in getting a real handle on what the whole picture of transplant expense (evaluation to listing to post-transplant) will look like.   Crowdfunding services do not offer this type of assistance. They really  just look to raise money.

5. The ability to have as much (or as little control as I like).  Each entity is different in how they set up the fundraising vehicles. They typically have a free page to host to raise funds like I would get from a normal crowdfunding source but there are many other unique & useful services.   Another organization I was considering & have had some discussion with is NFT (National Foundation for Transplants). Their approach is to rally one’s outside supporters by forming a fundraising committee.  There is a campaign chair that manages & organizes fundraising efforts & meetings. It cannot be a caregiver (this makes sense). There is also a Treasurer appointed  who oversees the local fund. They cannot live in your household either.  The nice thing about this is it would give me the chance to pull friends & family from all walks of life, locations, & connections to help raise funds.  The drawback is of course finding people who can take this task on for an extended duration & who are really vested in raising funds & planning events.  While most people think they would like to assist in this way, the real test comes maybe 6 months in, a year & half in, or longer, depending on how long the process takes. It takes a very committed group of people to give up a portion of their free-time to solely focus on raising funds for someone. It can be a beautiful thing, but I could also see after awhile how it could get to be a tough task.  However, all this being said, organizations (like the two I have mentioned) do this routinely & offer great support for people in pulling this together.

That covers the major reasons.  If I’m going to forfeit 5 percent of each donation, I’d appreciate a bit more return on investment than simply web hosting & a page with a dollar counter & a place to blog, but that’s my taste.  While using a non-profit organization somewhat locks a person in to them, there is much more return on that investment & I’m still getting well over 90 percent on each donation, with a tax deduction & support.  Plus, it will not adversely affect programs that could also assist me with keeping personal expenses in check or dealing with a reduced income.

Maybe I would feel differently if I was married & I had another income to help defray some of these concerns. I of course may get unsolicited help from family & friends if they choose to help with adopting certain bills or expenses which I would not refuse, but the more I can do for myself the better, especially if my transplant happens in a few years versus a few months.

While I am all for suggesting fundraisers & looking for unique means of fundraising the quandary remains of time & energy. I do not feel (with dealing with so many medical decisions) that it should fall solely to me & my support person to also consistently have to fundraise by ourselves. We have enough on our plates already.   I think being flexible & offering a mix of events & online donations is a viable way to go.  If I can get some additional help with printing, designing, & promoting some of this from an organization, I would be a fool to not capitalize on that.

I have been brainstorming several different ideas. But my trick is to come up with a variety of events, spaced out over time that take very little lead-time, set-up, or even management.  The reason for this is, even for friends who want to help I want it to be an easy & enjoyable experience & leverage the unique connections & resources I have with the time they have available to donate or something that they would already normally do or host, but just work on maybe just dedicating that to me.  My personal preference isn’t to use a committee to do that however, though I could see the value in it.  Others may feel differently.

At first, I was really overwhelmed by the whole prospect of raising money for this. I felt torn too because I had raised close to $1,000 for The LAM Foundation for LAM Awareness Day & I was concerned about asking continually for funds for any reason. I have a few causes I raise money for strategically a few times a year when I feel it has the most impact. Now I felt too, here’s more competition for people’s hard-earned money that I’m asking them to fork over. I was really conflicted at first, but then I realized this is something that I need to be selfish with & honest about. No one in this position, regardless of income, can do this alone without help.

I may have more ideas to share on this subject later on, but I did feel less conflicted & more empowered after doing this homework. I was relieved to find ways to get what I need without potentially having to take reductions on other support services or feel like I’m placing undue stress on people’s time or finances.

Right now, I am not going to state here which entity I will be using.  I am leaning in a particular direction but also want the financial coordinator’s opinions on things to have an informed conversation before I actually make a final decision. It could change based on new information they might have for me to give me a few more things to think about. If they are significant, maybe I’ll do another post about it.  But I was relieved to see I could compare/contrast different organizations & that there were other vehicles for this purpose that could be just as effective or more effective than crowdfunding.