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Mashwera (consultation) RE: Fundraising for a potentially ground breaking cure.

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#1 [Permalink] Posted on 24th January 2020 11:42

Salaam

Some of you are aware that my son is very ill with what is regarded as an incurable chronic illness called Crohn's Disease. A terrible life altering disease that causes major health issues and in some cases can lead to death. 

There is no consensus regarding what causes this disease, but a minority of medical experts have long suspected it to be bacterial. 

This disease is exactly the same as a disease found in cattle. In cattle it is know as Johne's Disease. 

In cattle they have found the bacteria that causes this disease. This bacteria has entered our food chain in the form of meat, milk, and contaminated water. This bacteria is zoonotic which means it can pass from animals to humans. 

In humans it has long been suspected that a bacteria was in play, but this particular bacteria was very difficult and almost impossible to detect within the human body. A new test has now been devised that quickly and easily detects this bacteria. My son has been tested and been found to be infected with this bacteria. 

This bacteria has also been implicated in other incurable chronic illnesses such as rheumatoid arthritis, multiple sclerosis, psoriasis, diabetes, etc. 

It seems that this bacteria mainly affects people with a certain genetic disposition, hence why the aforementioned illnesses tend to run in families. There are also other factors at play that causes vulnerability to this bacteria. 

There is a lot of research and clinical trials taking place around Crohn's Disease and the bacteria that has been implicated in this disease. Interestingly, there are a lot of Muslim doctors and researchers who are involved.  

Within the UK there is a team of researchers who have developed a blood test to detect this bacteria and also a therapeutic vaccine that will aim to cure this disease. Right now the vaccine has been tested and passed on healthy people and is waiting for approval to enter Phase 2 which is to test on ill people. 

Initially, research such as this and early clinical trials are privately funded until it gets to a stage where a pharmaceutical company is sufficiently interested enough to take over. Up until now everything has been done through volunteers and donations. 

As we know, there is a lot of money within the Muslim community and given the right sort of campaign we are very easily able to collect funds together. 

I am hoping that the Muslim community can take on this burden. The money required to carry this research and testing through is around £6000 - £10000 a month as far as I am aware. This amount is nothing if we come together as a community. 

The research team is based at Kings College University in London. I have met them and I have been getting help from them in regards to my son. They are very helpful and very open people. They are not doing this for profit and their only concern is to put an end to this illness. 

I would like your help, advice, expertise, and influence in this regard. I am hoping to organise a delegation of Muslim leaders who will be willing to meet with the research team at Kings College University to verify and approve a national fund raiser. I have never done anything like this before so need your help and support. 

Please visit www.crohnsmapvaccine.com for more info. 


May Allah reward you all. Inshallah the Muslim community can play a big part in this ground breaking cure. 

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#2 [Permalink] Posted on 24th January 2020 12:01
Our sincere Dua's are with you and wish you and your family all the very best.

You may have tried this already but I can still suggest it. GoFundMe? JustGiving? Not sure how it works and what's involved, but it can raise lots of money.

I've also heard of people raising money via the radio stations, maybe try that too (not the Music stations, instead, talk shows etc)
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#3 [Permalink] Posted on 24th January 2020 12:23
abu mohammed wrote:
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There are an estimated 1600 mosques in the UK. If each mosque was to donate £10 each a month then it will come to £16000 a month which far exceeds the estimated requirement.

If only half of those 1600 mosques donate £10 A month then it will come to £8000 a month which will still be enough as they have other means of funding as well.

This is what I am hoping to tap into. To do this I will require the help of influential community/mosque leaders. This is why I am hoping to get together a delegation from across the UK muslim community who can visit the researchers and the laboratory and then hopefully put their weight behind this campaign.
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#4 [Permalink] Posted on 25th January 2020 13:25

xs11ax wrote:
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W-Salam,

May Allah Ta'ala bring ease to your son and grant him full and speedy recovery (Ameen).

When faced with a situation, you need to look at the best available option deliverable on the ground. You are asking Muslims to contribute which is a noble effort but by the time you actually mobilise so many Mosques and Muslims, it may be too late. Moreover, there are others who are looking for research grant (within the Muslim community) for their own causes so priority may not be there.

In my opinion, simply for the sake of delivering the necessary assistance, you should join a Charity or a group of like minded people (Muslims or Non-Muslims) and brainstorm on how to get this done.

The Muslim angle is feasible but do you have the time and energy to mobilise people at such scale?

Please remember that I am not commenting on making herculean effort to get this done (it can be done) but is it the fastest way to get things done?


 
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#5 [Permalink] Posted on 25th January 2020 21:24
Muadh_Khan wrote:
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Quote:
May Allah Ta'ala bring ease to your son and grant him full and speedy recovery (Ameen).


Ameen.

Quote:
When faced with a situation, you need to look at the best available option deliverable on the ground. You are asking Muslims to contribute which is a noble effort but by the time you actually mobilise so many Mosques and Muslims, it may be too late. Moreover, there are others who are looking for research grant (within the Muslim community) for their own causes so priority may not be there.


The numbers and figures I gave was just to illustrate what can be done. Yes, you are right. Mobilising so many mosques/people and uniting them on a single cause will be an almost impossible task. If I could pull it off I might as well declare myself the Mahdi!

But even something like 100 mosques donating £50 a month would be great. This would raise £5000 a month. The other half can come from elsewhere. Or maybe get 200 mosques to donate £50 a month which will yield the full £10000.

Quote:
In my opinion, simply for the sake of delivering the necessary assistance, you should join a Charity or a group of like minded people (Muslims or Non-Muslims) and brainstorm on how to get this done.


They already fundraise and have been doing so for many years. They eventually get the money together, but the time it takes can slow the research down. The research will not stop. At this stage they will definitely see it through. But I thought it would be nice if the muslim community come to the rescue. They fundraise in dribs and drabs. The muslim community has the ability to raise money in wads.

Inshallah if this vaccine works, and so far it seems it will. (It has already been tested on sick cows.) Then it has the potential to treat many so called autoimmune illnesses, some of them which are relatively quite common within our communities.

Quote:
The Muslim angle is feasible but do you have the time and energy to mobilise people at such scale?


Some, but not too much.

I was thinking of arranging a delegation consisting of ulama/leaders from the various muslim communities of the UK. The university can host a seminar explaining everything and aim to get their support. If the delegate decide to support the research then they can get pledges from their community.

Quote:
Please remember that I am not commenting on making herculean effort to get this done (it can be done) but is it the fastest way to get things done?


To be honest I think it will be done with or without our help. But with our help the funds can be raised a lot easier and the research will go a lot smoother.

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#6 [Permalink] Posted on 25th January 2020 21:28
Forgot to mention the dawah aspect. Inshallah if this treatment is successful then the Muslims of UK will be known to have contributed to a cure for potentially many illnesses.
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#7 [Permalink] Posted on 25th January 2020 21:36
Plus these people have been really good to me and my son. They have helped us a lot and continue to help, and never asked for or expected anything in return. I would like to help them out in a meaningful way.
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#8 [Permalink] Posted on 25th January 2020 21:46
xs11ax wrote:
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Forgot to mention the dawah aspect.


This would make some for some excellent publicity furthering the aspects of Islam to many unbelievers!

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#9 [Permalink] Posted on 26th January 2020 08:55

xs11ax wrote:
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I thought that the intention was to get help for your son and others as quickly as possible. If the intention is "Dawah" and community relations then by all means, grind away at the issue.
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#10 [Permalink] Posted on 26th January 2020 09:53
Muadh_Khan wrote:
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Salaam

It's a bit of both.

Regarding money.
The research has been going on for quite a few years. I think it started 30 years ago and slowly grew from there. They get help and support from Guys and St Thomas hospital and from Kings College University as well. They also have some wealthy business men who are supporting them with big donations. A lot of the money comes from individual fundraisers carried out by friends and families of those who are affected by this illness.

The money comes in dribs and drabs and at this stage no matter what happens the research will push through. The ones carrying out the research are very down to earth people who are mainly volunteers investing their own time and money. The lead is Professor Hermon-Taylor who was a surgeon who specialised in Inflammatory bowel disease. He is supported by various other doctors including Dr Agrawal who has come over from Australia to help as the research enters phase 2. Inshallah if it passes phase 2 then there is already an interested pharmaceutical company that will take over from there. They are already involved, but not with the funding side as far as I am aware.

It's the dribs and drabs that I'm hoping the muslim community can help with. Instead of dribs and drabs if we can organise a monthly donation as a community then it will ease the pressure for them.

Regarding dawah.
Dawah was a secondary thought. In my opinion dawah should not be insincere and for outward display. Dawah should be sincere and the outward display should reflect what we are below the surface. We shouldn't be helping just as an outward display of insincere dawah, but we should be helping because many people are chronically ill, very possibly due to this particular bacteria and if we have the means to help in a meaningful way then we should. If the muslim community comes together and helps see this research through (inshallah) to a cure then automatically without even trying it will be dawah.

Many Muslims suffer from autoimmune and inflammatory illnesses where this bacteria is implicated. Just a guess, but I think in some cases such as diabetes and rheumatoid arthritis the percentage is higher in people from the subcontinent and South Asia. If this is a cure then the muslim community of the UK will benefit a lot.

Alhamdulillah we as a community in the UK have a great infrastructure due to the way our communities, mosques, madrasahs work and we have the ability to come together as a community to quickly raise considerable funds. We have many doctors, community leaders, businessmen who can potentially help. A lot of the research on Crohn's Disease and other inflammatory illnesses has been conducted by muslim doctors.

Like I said, the research and (inshallah) eventually the cure will go ahead with or without our help. But it would be nice if the muslim community could come together and help. And of course it would be great dawah. Alhamdulillah the muslim community in the UK already do a lot of charity work with the homeless, elderly, people in poverty etc but much of this goes unnoticed by the non muslim community. If we help with the vaccine and the vaccine proves effective then our contribution as a community will not go unnoticed.




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#11 [Permalink] Posted on 26th January 2020 10:03
Muadh_Khan wrote:
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On a personal level I try to help individual people as much as I can to understand their illness and to access the best healthcare and medication available. I spend a lot of time on other forums helping people in my own way and I also support some people who are local to me.

I do whatever I can, when i can, but some days it can be difficult due to managing my own son's illness. Today we are getting ready for my son to be admitted to hospital again. My youngest son has also fallen ill where all the joints of his body aches. It causes him pain just to walk down the street. He can only pray salaat while sitting on a chair and even then it causes problems. May Allah make it easy for us.

Before my son fell ill I was supporting a brother who had multiple sclerosis. Unfortunately he succumbed to his illness and passed away. I am helping another brother now who also has multiple sclerosis. I find that the muslim community has failed the disabled and chronically/terminally ill members of our community eventhough we have so much money and resources available.
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