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Grassroots Rosacea Non Profit

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"Grassroots movements are associated with bottom-up, rather than top-down decision making, and are sometimes considered more natural or spontaneous than more traditional power structures." [1]

The RRDi is a grassroots organization founded by rosacea sufferers who are volunteers. The board of directors are all rosacea sufferers and their motive to  volunteer is to help rosacea sufferers. Now compare that with who serves on the 'other' rosacea non profit organizations board of directors. [2] As far as we know there are only three other rosacea non profit organizations (ARSC, AARS, and NRS) and possibly one other, the AAD that might spend a tiny, tiny bit of money on rosacea research. All the board members of these 'other' non profits are NOT rosacea sufferers and are mostly comprised of businessmen and medical professionals (dermatologists) who have a vested interest in rosacea since they may receive a salary or benefit from money spent on private contractors used by the non profit organization, or receive compensation for attending conventions or meetings sponsored by the non profit organization. Follow the money where the non profit spends the most of its donations on, and if you take the time, you will discover it is very little on rosacea research. You may wonder how non profits work?

The members of the RRDi are mostly rosacea sufferers [rosaceans] and have a say who serves on the board of directors of the RRDi (the charter requires that the board members suffer from rosacea). The board of directors of the RRDi are sometimes chosen by the other board members but every five years the voting members of the RRDi may vote who may continue to serve on the board of directors. The members could replace the entire board of directors. This is bottom up decision making. 

The other non profit organizations are NOT grassroots and work from the top down. How do the other non profit organizations choose their board members. Top down decision making. 

What Motivates Board Members?
Money is the motive on who makes the decisions on the spending of the donations with the 'other' rosacea non profits and if you follow the money you will find that the board of directors make sure they benefit in some monetary way. This is a top down direction since the other non profits are run by NON rosaceans and have their own personal agenda so that members of the board somehow benefit with some compensation with the spending of the donations. Money is usually at the root of any top down decision making process. 

Grassroots Motive
So if you have similar grassroots philosophy why not join the RRDi and volunteer. If money is your motive, go to the 'other' rosacea non profits. [2] If volunteering by helping other rosaceans is your motive, you have found the only grassroots rosacea non profit organization on planet earth. [3]

Only One Non Profit Organization Run by Rosaceans
There is only one non profit organization for rosacea founded by rosacea sufferers, this one, the RRDi. All the others are founded by non rosaceans and all you do is see who is serving on the board of directors and note how the board members on each rosacea non profit benefit how the donations are spent (each board determines how the donations are spent). Follow the money (where does most of the donations end up being spent on?).

Donations Spent on What?
If you could gather together say 10K rosaceans into one non profit organization for rosacea and fund a paper on a rosacea topic and receive from each member donating just one dollar, it would be a cinch to get a reputable medical clinician to investigate further into whatever topic is chosen and nail it to the wall with a double blind, placebo controlled, peer reviewed study. However, if you did get 10K rosaceans together to donate each $1 that would be a miracle in itself. What might that subject be? Alas, this dream, which began over sixteen years ago with the RRDi was formed, hasn't brought about such unity among rosacea sufferers. Instead, rosacea sufferers are splintered into private social media groups, i.e., Facebook, Instagram, Reddit, etc. and continue to parrot the non profit organizations for rosacea that are run by non rosacea board members. And rosaceans prefer and love it that way. Does these social media rosacea private groups engage in any rosacea research?

Grassroots Glimmer of Hope for Rosacea
However, there is perhaps a glimmer of hope. The owner of the Rosacea Forum, [rosaceagroup.org] formed a non profit organization [RRF] about fifteen years ago and gathered together a group of rosacea sufferers and collected a total of $16K and donated all of this to the NRS. So, it can be done. However, the RRF non profit for rosacea dissolved. What happened? Read for yourself. This example of the RRF is a grassroots non profit that actually did something in sponsoring their own research, except they gave the $16K to a non profit that is run from the top down. A brief glimmer of grassroots for rosacea. 

Grassroots Non Profits
Another example of an excellent grassroots non profit organization is the The Erythromelalgia Association which actually sponsors their own research so it can be done.

Is a grassroots motive something to consider, or are you content with the current status quo rosacea research being done by the 'top down' decision making process of the 'other non profits for rosacea' whose board members are not suffering from rosacea?

End Notes

[1] Grassroots, Wikipedia

[2] Links, Other Non Profit Organizations 

[3] Volunteering

What Community Support Means to You?

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Hello Everyone,

This post is not to compel you for donation but as you can see from the above post from Admin that we are working from the ground and helping everyone to understand this disease rosacea and its associated co-morbidities and it is all free and open to read and we want to give you more things and more insights on that, which still needs to be explored and we want your help in this. If everyone will accept this RRDi as their own and contribute to this organization a little donation for further research, it would be appreciable. Thank you

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