Hi all. Who here has run a successful GoFundMe campaign, and would you please give some advice?
I’m not looking for a pity party. My family and I are dealing with the situation as best we can. My symptoms have worsened to the point I must now live with my daughter.
I was diagnosed with MS last year, but after a drastic turn for the worse and a new neurologist, I was re diagnosed with ALS. The two diseases have very similar symptoms and diagnosis is actually a process of elimination. The general lifespan prognosis is 2-5 years, but with advances in medicines and treatments, more and more ALS sufferers are living beyond that, some ten and even 15 years.
With that in mind and hoping I do see several years, we want to remodel a bedroom and need to remodel the bathroom for a roll-in shower. The shower stalls themselves generally start at $2000 so add other parts and labor to that. Wheelchair adapted vans start at $10,000 used.
My sister started a GoFundMe account that has brought in a generous $1375 that I feel blessed to have received. It has stalled at this point, however. When it is re-shared, it gets ‘likes’ and maybe another re-share, but no more donations. I do not expect those who have contributed to donate again.
How does one promote these accounts? Is there a trick to it or is it just luck of the draw? It would help my daughter do much to
How does one promote these accounts? Is there a trick to it or is it just luck of the draw? The bathroom remodel and a handicap van would make caring for me much easier for my daughter, a single mom raising two kids.
I personally don’t think that many people donate to strangers unless it’s some national story, and often that seems to be some guy asking for beer money or something. THAT people will get behind.
Have you thought about good old offline marketing of sorts. Fund raisers at bars, schools, etc. where maybe an entertainer would take up your cause and help? Something where people actually get something for giving and where people can give and see you as an actual person, not just yet another gofundme.
Are there organizations locally that you could seek out that might help. Maybe nonprofits or hospitals know of some resources. Hospitals sometimes have their own side of things that raises money for wheelchair ramps for kids and such. Just a thought.
I wish you well, not just in the fund raising, but personally as well. I have an endeavor that I try to raise funds for, work I do for a certain community, and it is like pulling teeth to get them to participate in something that comes back to help them by kicking in a few bucks. Raising money is hard. That’s why there are professional fund raisers out there that do it for a living. That’s why nonprofits that do well have amazing grant writers. It’s tough. You’ve probably done better than many already. I would look into more avenues more than I’d push the same thing, but that’s just me. Make sure that whatever you do you really get your story out and have people connect to that. Story is everything. Just my 2 cents. I hope it sparks something that gets you at least that back.
Before relying on a GoFundMe, the OP needs to get signed up for Medicare. People with ALS are automatically eligible even if they aren’t 65 yet. There may be exclusions, but a hospital social worker or even your neurologist’s office would have more details.
I haven’t planned a GoFundMe, but a friend did one for another friend, and I did research to help her out. These campaigns are most successful if:
The beneficiary has a lot of affluent friends.
The beneficiary has an acute, not a chronic illness or injury. People want to feel they’ve resolved someone’s problems, not just helped someone with a chronic problem cope. (This disturbs me, but it’s true.)
You might try posting updates with pictures and asking people to share the update. (“Thanks so much for your generous donations. Only $600 more, and txobbin can take a shower.” with a photo of you in a wheelchair outside the shower. Don’t just share the original GFM post.
I’m sorry you’re in this situation. nearwildheaven is right about Medicare, but Medicare rarely pays for roll-in showers. Have you contacted the ALS Family Foundation?
I have signed up for Medicare, it’s in the pipeline, I just haven’t got my number yet even tho ALS does indeed get expedited.
My nephew did mention doing a BBQ fundraiser, I haven’t heard back from him yet.
And my grandson, for the past six years, does do a fundraiser for his birthday in lieu of presents. He’s done this since he was six, of his own volition. He has advocated for a homeless shelter, an animal shelter, for supplies to send overseas to the troops when his uncle was stationed overseas, and a few others. My sister mentioned trying to get the local newspaper or TV station to do an article or segment on that, main thrust *his *philanthropy with a side mention of why it is for ALS this year.
In two weeks we will attend an ALS clinic and ask for ideas and help. We do know of TeamGleason and will be reaching out to that organization too. They may help get the front doorway revamped for wheelchair accessibility.
My daughter has posted updates on the GoFundMe page and occasionally on FaceBook. I like the idea of the wheelchair outside the shower. I can still get in the shower with help, but the day is approaching when I will have to be placed inside.
Regarding #1 I have a few affluent friends, that is how it got as high as it did. As for #2, yeah, as **justanothermike **said, maybe I should just ask for beer money…
Thank you nearwildheaven!
My father was a disabled vet, 100% from WWII. As his daughter I was able to attend junior college with benefits from his service. I will look into the DAV to see what help they may offer.
I’ll second twitter. There is a very active disabled community on there. A little research will help you find the ALS community. It also helps if you have stories to share with the community. They don’t have to be long, but validating others with ALS, and seeking validation for yourself will help build followers.
MY nephews were successful in reaching their goal for one who crashed on a mountain and ended up in paraplegic. His brother posted frequent updates kept it positive as possible and hash tagged the hell out of it on twitter. It seemd to reach many outside their immediate sphere and spead to otheres in the bking community and beyond. They reached their goal pretty quickly (20k) then he ended the campaign, though it might’ve kept going but they were ready to move in with life.
So you have to beat the drum consistently, post updates, thank your supporters ask them to share the message.
I don’t have any advice on your Gofundme–other than messaging the mods and asking permission to promote it on Straight Dope.
But instead you need to look at your assets and living expenses. For example how much is your house worth? If you have a $300,000 house you might consider selling it and moving to a $100,000 house in a low cost living area or to an apartment-- perhaps assisted living. And of course you need to systematically examine each of your expenses to see how you can frugalize.
No, no fancy house. I am living with my daughter. She had just been through a divorce and closed on her home right before my symptoms started. I think she would actually lose money to sell her house now, plus there isn’t a lot of downsizing we can do with two adults and two teenagers in the home. I am at the point I cannot live alone. And assisted living is expensive.
My SSDI checks barely cover living, medical and caregivers expenses for me. Cobra payments take up nearly half, and insurance provides for twice weekly baths but not daily care, we are paying out of pocket for what we can. I hope to get thru the red tape and get on Medicare soon. And then I hope the difference in coverage does not eat up the savings in premiums. Any advice on the best supplement plan for Texas? I have heard to stay away from some Medigap plans as they do not cover enough essentials and one is left scrambling for needed medicines and care.
Do you have healthcare insurance brokers out there? In Washington state I can get pretty good info from brokers on healthcare insurance policies, including Medicare and medigap stuff.
I have searched online for information on supplemental insurance. Any site I go to wants my name and number and then still don’t give quotes.
*“Stand by for a call from one of our representatives!” *
And then my cell blows up.
As I have Bulbar Onset ALS, I can no longer speak, my daughter will have to navigate that mess. I guess I’m paranoid, how do you know who to trust to get the best deal?
I had a COBRA question and went to the state’s health plan website and found a phone number to contact a live person. The live person didn’t know the answer but gave me a phone number of a broker in my area who could help.