fasttrack1982 wrote:I am a businessman with PSSD, I could donate money.
That's wonderful! The second steps, after the spreading of our story all over the world and the starting of a foundation, is the foundraising of research. For example, a research on mouse to study the effect of a drug on the brain and cost 50 thousands dollar, more or less. It's not very much, we can reach this target easily.
But how we can start to collect this money? Paypal account for example?
Here in Italy we are thinking to do something with dr. Melcangi in Milan. We can do something real for our condition.
He is a researcher who has studied Post Finasteride Syndrome ( PFS) in the past. First he would to do a clinical study with us ( few italian patients, more less 5-6 persons ), then, if we find enough money, he would to do a sperimental study with animals.
1) The clinical study means that he admit us to the hospital in order to check out a lot of biomarker ( This part is not too much expensive ). He wants to find a common marker of the syndrome in order to explain the patogenesis. Why this is so important? Becouse if he finds a common biomarker in patients with pssd, PSSD can be scientifically demonstrated in the medical field. This step can allow others researchers over the world to start others study about our condition. It could be very important.
He and his team has found a neurosteroid imbalance in PFS patients. Like PFS, he believes there is a neurosteroid change in PSSD tha can explain the persistent symptoms ( and so the epigenetic change. I' am strong agree with him about that. I ' ve found scientific studies about this and I will post soon).
There is only a relative problem about this part: the clinical study uses Italian medical system insurance. So, if a stranger wants to enter in the study, he has to pay his hospitalization cost by himself. The clinical study doesn't administer any substance to the patients. It is only done to discover something wrong in our system ( throught ematological analysis, rhachicentesis, etc. )
2) at the end of the clinical study, he would to start the sperimental study with animals. This part needs a lot of resourches. Now we are thinking about raising money but we are only few patients here. We need a foundraising. Me and sjv16477 are working togheter to find a solution. but we need your support and suggestions! The sperimental study could test a lot of things, but is directly proportional with money that we can find. more money we reach more tests we can do. At least we need 40.000- 50.000 Euros to start.
So, do you have any suggestions, questions or thoughts?
Problems to solve:
1. We have no business background. Advices are very appreciated.
2. How to do a foundraising, I mean: which way is better.
3. Demonstrate to all of our community that we are searching money for the study. it has to be clear to everybody, under the sun. I have no idea how to do.
4. others problems still unknown.
(Sorry again for my bad english, I hope it can be understandable).
Let work togheter!!
For some reason I am not authorized to respond to private messeages, but I am willing to donate some money if someone is serious about getting a foundation started.
future-recovery wrote:I think that Melcangi needs to post a public message about this. One can not always rely on what a user says.
I am agree. Good idea. Now we are only at the beginning. If we find patients and a foundraising way we can start and Melcangi will post a pubblic message. It is a working in progress yet
fasttrack1982 wrote:For some reason I am not authorized to respond to private messeages, but I am willing to donate some money if someone is serious about getting a foundation started.
You can answer to private messages only after you have answered to a certain number of posts!
I agree with Sonny we need a plan in writing. I think the first step is to create an organization whose goal is to raise awareness and find doctors and or researchers that are sympathetic to our cause, and also find more people that suffer from our condition. This step would need to come before trying to fund a research study. That would come later. I would imagine there are people who have PSSD who either don't know it exists, or who have never visited a forum. We would need someone to lead the efforts and be the head of the organization. The organization needs a leader because otherwise it will be impossible to make decisions and take action. I have a wife and two kids and full time job plus my own business so I could not do this. I wouldn't have enough time at this point to be heavily involved in the organization, except as an advisor. I would nominate either Ghost, Sonny, or Corragio. We would also need the leader to delegate tasks, and perhaps appoint people to specific roles such as "head of fundraising" "treasurer" (handles accounting etc)etc. "This person needs to understand that they are essentially signing up for an un-paid part time job. They need to be very trusted by the community as they would be making decisions with money. There would need to be an open accounting as to exactly what is being done with the money so all members of the community could at least see how it was being spent.
