This website has always functioned as a “free” cholinergic urticaria charity (also called a foundation). Not in the sense of soliciting donations, but in the sense of providing a platform of free support, articles, videos, and information for people suffering from chronic heat hives.
In all the years that I’ve maintained this site, I’ve never solicited donations or asked for financial support. I’ve always provided articles and forum membership free of charge (as a labor of love), and I’ve earned a very tiny amount of revenue from advertisements, which isn’t even enough in a whole year to cover 1/2 of a month’s living expenses. Clearly I haven’t labored to create this site for money!
My goal with this site has always been simple:
- Share my own story of cholinergic urticaria as it has evolved over the years
- Create videos and articles to share information regarding treatments, symptoms, pictures, and more, so that others new to this condition can find ways to treat or manage it
- Provide a place where people can share their stories and ask questions to others
- Maintain a single site so that doctors or researchers could access as many cholinergic urticaria sufferers as possible if the need arose
Although I do consider this site a “charity” in the sense of helping others, I’ve never tried to form an official charitable (non-profit) organization for cholinergic urticaria. If I wanted to do so, I could easily do it. However, I have never had an interest in starting an official charity for cholinergic urticaria, and here’s why:
Charities Have a History of Financial Accountability Issues
The sad truth is that when you donate to a charity, you never really know how that money will be spent. Some people take ridiculous salaries for their “charitable” or “non-profit” work. If you search for “charity fraud,” you’ll find numerous stories of people getting “rich” from the donations they’ve received.
While I’m not against all charities, many are either inefficient, a waste of money, or outright frauds. Do you really know how your money will be spent? No, you don’t. Why would I want to start a charity? So I could take a salary? So I could take half of the donations as a salary and donate half to research or supplies? The whole idea just seems absurd, especially for this relatively rare condition.
That’s why I prefer to help individuals directly when I see a need. I don’t want to give money to a cholinergic urticaria charity, and I don’t want to solicit funds for one, either. I’d also advise any sufferers to be extremely cautious before donating to a supposed charity.
Researchers Continue to Study this Disorder
Some may suggest that if we raise money, we can hire a researcher or pay for more scientific studies. That’s true, but here’s the bad news:
Problem 1: I have a huge file on my computer full of cholinergic urticaria research studies throughout the years. They do little or nothing to help cholinergic urticaria sufferers in any practical way.
Problem 2: Research studies (or hiring a researcher) would be so costly that it would take tens of thousands of dollars, if not hundreds of thousands of dollars for each study. Most people don’t have that kind of money lying around, and there aren’t enough people with cholinergic urticaria in the general population who are willing to donate enough to make it happen on an ongoing basis.
Problem 3: Research is ongoing for cholinergic urticaria anyway, even within the past year. They don’t find much, but my point is that researchers will continue to study cholinergic urticaria REGARDLESS of whether an actual charity is formed.
What Would a Charity for Cholinergic Urticaria Even Do?
If we don’t raise money for research (which is ongoing anyway), what would that money go to?
- Could we deliver medical supplies to sufferers? No, a doctor would need to diagnose a person and prescribe medications directly. There would be a mountain of red tape before anyone could even consider doing such a thing, and everyone responds to medications differently. Anyway, some people have access to free healthcare, and others have health insurance or health savings accounts. Not all people have a financial need when it comes to medicine.
- What about non-medical supplies? There are other items that some sufferers use, such as saunas, cooling sprays, or cooling vests. However, the problem here is that not everyone needs or benefits from such supplies. Many people on this forum alone suffer from both cholinergic urticaria and cold urticaria. A cooling vest would actually cause a hives reaction for them, and many wouldn’t want to wear a bulky vest. Furthermore, most of these supplies cost $100 or less, making them very affordable. Hence, soliciting donations is again unnecessary.
In other words, there’s clearly little that a charity could do. If you want to get active, then share your story and answer replies to others on this forum. Donating a small portion of your time by telling others what worked for you is a simple (yet free) way to change lives.
Conclusion: I Don’t See the Point in a Charity
While starting a cholinergic urticaria charity seems like a good idea on the surface, I cannot think of a real need that it would meet, and that’s why I’ve never started one, despite having an easy platform from which I could launch one. Research is ongoing; there would always be questions of where the money is going and how it’s spent, and I’m more interested in offering practical advice and tips.
If I’ve learned anything about cholinergic urticaria through the years, it’s been this: No two sufferers are the same. Some benefit from a simple antihistamine, some don’t. Some have a severe case that doesn’t respond to the most aggressive of treatments, others have a very minor case. Some suffer from only cholinergic urticaria, others have many different physical urticarias simultaneously.
This is not a black and white disorder. That’s why I’m mostly interested in providing a supportive and informative website, not one begging for money.
So in conclusion, I’d love to do anything I could to help sufferers, but I just don’t feel like a charity would do much of anything at this point, and I have no intentions of starting (or supporting) one unless I can see a real benefit to doing so. Perhaps I’ll start one in the future if I see a benefit, but for now, I’ll continue doing all I can to advance cholinergic urticaria solutions and support through this website.
I’d strongly advise others to be skeptical of charities and to ask the question, “Does this charity really do something that isn’t already being done?”