Sharing ones stories at The Mighty
I believe that The Mighty is the next generation of healthcare. The site is a community of people who share their stories around health issues from disability, disease and mental health issues. It is a place that helps people to not feel alone because they are connected to other people who are experiencing the same issues.
The Mighty is looking for others to share their stories. To submit your story, all you have to do is click Submit a Story in the top left or go to the Settings tab of your dashboard to begin the submission process. There are topics from parenting to autism to disability to chronic illness to rare disease to mental illness to read and write about.
In full transparency I was the first investor in the Mighty. There is something so incredibly powerful about what the founder is building here. It is a place to feel comfort and when I read the incredible stories I am grateful to be part of this companies growth.
I think i had checked the site out when you mentioned it before too. It seems like a great option for support of those with difficult health issues or someone they care about who has those issues. Where is the business / monetization engine or angle? Can you share even high level? Just struggling to see that side. Absolutely taking nothing away from the social utility of it, just can’t see where the finances could come from to make it profitable long-term. Or is this more a “social / philanthropic” venture?
The data in there is powerful. Plenty of companies want to sponsor the site. They are starting to figure it out. The key is maintaining authenticity for the audience and that is something they NEVER want to lose.
I wish them the best. It is an interesting issue because as you say what is the main thing is keeping authenticity, but then adding sponsors puts that at risk. Not saying it can’t be done, just tough. But a good site so hopefully they can thread the needle. and as a side note one thing I love about your blog (a lot like fred and mark suster) is you are such a passionate advocate for your companies. Love that!
Matt, great question on monetization. I’m the founder/CEO so I can give you a little insight. The two biggest paths are through sponsorships and data. The data is extremely valuable in healthcare. One company in our space just raised $100M: http://www.xconomy.com/bost…We’ve got a long way to go, but we feel confident we’re heading in the right direction. Serving our community comes before all else. We’re fortunate to have great investors like Joanne who has provided so much support beyond just the capital. She believed in us when we were just a 2-person team and had the courage to write our first check.
If I have only (briefly) spoken to one person in the only other family I’ve ever heard of who has the nearly the same familial BROC syndrome (familial breast/ovarian cancer) syndrome story in the ENTIRE USA*, what is the likelyhood I’ll meet someone:1)semi-similar (even better, finding a third family)2) someone who can relate to the isolation of doctors really not knowing while monitoring3) someone who can relate to the fact that doctors have dual reactions of both wanting you but not wanting you to have cancer yet, because you make an excellent study subject4) Someone who can relate to arguing with insurance/doctors/genetic counselors/the medical system that yes, you are not probable, but not impossible, and therefore the normal rules don’t apply because you’re working with someone who under normal circumstances doesn’t exist.On some level, I’m ok with my isolation even though it can be painful. It often can be more painful dealing with other patients that are supposedly similar to me because I feel like I technically shouldn’t exist. (and yes, I’ve spoken to the organizations involved with women like me, FORCE, Bright Pink, etc ;they really struggled to find a peer match and they don’t actually have any young women on their rolls doing peer counseling with close to similar stories at all. 4 different peer led facebook groups for the same group don’t either). I’m fairly comfortable with doctors and researchers at this point, due to the fact that I’m part of a reading group of patients, doctors, and researchers of studies in the area, and I come as prepared as I possibly can to talk to them, to learn, and to state my case when needed.Still, there are days I would love to not be so alone in all of this. If I did this, and told my story(ies), how likely will that happen, or will I repeat my own history of experiences* A mixture of factors apparently makes my likely genome sequencing results really odd, and then when added in combination of my family’s histories’s and in some cases, genome sequence results, even odder. As for the other family, there is an age gap, and my actual analogue as a patient is still a kid, and at most a teen (if that old yet and if she exists).
I know a few others who have the BROC gene. I sent this to the founder. It is definitely something worth speaking about with a community.
I don’t have the gene. My mother doesn’t have the gene. She had breast cancer (triple negative laced with ER postive cells). She didn’t do well in chemo. My aunt has the gene. She had cancer soon after my mother did. She had fairly similar chemo, and a much more common type of tumor. She came out much healthier. My grandfather has the gene that my aunt does. My grandmother, who died of breast cancer that metastacized to the bone or bone cancer interrelated to the breast cancer she got around 32(!) is a bit of a ?????? since she died right before the 6 day war at around age 45.This occurs in something like less than 1% of ashkenazi families. That’s why only know one other family, and that’s why I tend not to get along with other previvors. I’m the odd lady out, they don’t really know anything about why this is happening in one of the most studied groups among BROC families. It is also why researchers are weird around me Under 10% of all ashkenazi familial broc cases don’t have the founder brca1/2 gene, and due to the holocaust/my mother’s and grandmother’s health history, they don’t have any indcation of something like lynch syndrome, or gastric cancer syndrome presenting as breast cancer (that happens), which makes up a significant portion of that last 10%.I just find it isolating because no one is quite sure what to do or how to react, and while people want to research me, it isn’t like there is a huge knowledgeable of options about what happens with people like me. Right now, it is me, nominally my brother, and the children of one woman. That’s it.
Hi Shana. I’m sorry you’re in the situation you are. It sounds like you are taking the right approach by getting involved in many different groups. Although I can’t promise you would find someone with the same exact syndrome on The Mighty, I do think you’d find many people who are facing a similar situation with their own unique health conditions. You may not connect around the condition, but the emotions you share. The comments we get more than any other are along the lines of “I don’t feel alone anymore.” If I can helpful in any way, please reach out to me at [email protected].
what you write about in regards to isolation is the reason the mighty was built. there is something empowering when you know you aren’t the only one dealing with any health issues.