The Erythromelalgia Association

[Guide]

First off, if you don't know what Erythromelalgia is, it is listed as a rosacea mimic and should be ruled out in a differential diagnosis of rosacea. 

Someone kindly pointed out to me that The Erythromelalgia Association website is very user friendly and was impressed with the free Guide it offers on its website indicating to me that the RRDi needs to be more 'user friendly' and offering such a guide. So I decided to investigate and contacted TEA and asked for a copy of the latest Form 990 which was emailed to me and I have given a cursory investigation and am very impressed with how this 501 c 3 non profit organization spends its donations. 

Form 990

First off, the board of directors are all volunteers. TEA has 2000 members, is a grassroots patient advocacy 501 c 3 non profit organization, and more importantly in 2018 received over $50K in donations which were 100% public (no private donations). 

They spent $103K which breaks down to this: 

$75,000 for Grants and similar amounts paid (list in Schedule O) "Gift for research directly related to erythromelalgia"

$13,398 for Professional fees and other payments to independent contractors

$14,230 for Printing, publications, postage, and shipping (newsletter)

$884 for other expenses
Total Expenses $103,512

Download Form 990 EZ for 2018 and read it yourself:
Form990Package.2018.pdf

The RRDi Imitates the TEA

So the TEA is definitely how a non profit organization should be run and I give the highest marks (4 stars) possible to TEA for how it is helping Erythromelalgia sufferers. We wish that the members of the RRDi would be interested in imitating the TEA and help make the RRDi just like how TEA is run. The RRDi is very similar in how the board of directors are volunteers. We just need volunteers to step up to plate like the TEA volunteers are doing. It would be good for members of the RRDi to ask questions about the above or comment on this post. Just like the RRDi whose board of directors all suffer from rosacea, TEA's board of directors have at least five who suffer from EM. In 2018 these volunteers donated $50K for EM research, and actually spent $75K on 'research directly related to erythromelalgia.' Isn't that the way a non profit organization should work? Compare that with the three other non profits for rosacea who spend most of the donations on private contractors owned by one of the board of directors or spend most of the donations on the members who are mostly dermatologists for meetings and conventions, and very little, around ten percent on rosacea research. The three other non profit organizations for rosacea are run by business professionals or dermatologists and not one of the board members suffer from rosacea which explains why and how these three other non profit organizations for rosacea spend the donations. Will rosaceans ever be united and support a non profit organization like TEA? Hope.