"Stand up for what you believe in, even if it means standing alone."

I saw this quote on the Facebook page of our member, Rishi Agarwal today.

"Stand up for what you believe in, even if it means standing alone."

I really like this quote and perhaps the timing is not coincidence. I am having trouble deciding how to proceed on a very important matter here. Do I risk the wrath of many in the professional thalassemia community or do I stand by my beliefs and say every word I want to say? Is it worth the risk of destroying my own credibility to speak out on a very important matter that affects thalassemics, even if may do real damage to my standing and this group? Even when my words will have very little effect, other than to possibly change the opinions of some people? What is most important? Speaking out or protecting the work of this group, even when it means that as a result, I do not stand for what I believe in? I have a history of doing the right thing but not always the smart thing.

Who do I think I am? Don Quixote tilting at powerful and well financed windmills?

How do you feel?

Andy,

I know that you will do the right thing.  We are all here because you try to get us the right information - you ask the right questions.  There are plenty of other people out there to continue feeding us the wrong info - we're here because we love our kids and want the best treatment for our loved ones - so all we need is the truth.  The worth or standing of this group has never been rooted in the approval of any particular group or influential person - it is about helping thals - that is what we are all about.  We need to know what is best for us and our fellow thals.  My opinion is that we support you in doing what you have always done.  We don't need a good reputation in the thalassemia community we need our loved ones to be safe and hopefully cured soon.

Don't let anyone intimidate you.  We - the patients and families are with you.

Thanks,

Sharmin

Dear Andy,

i realise that sometimes what we may say stands to contradict all that others may say. we may feel that it's the right thing but if it's effect is little or only has negative effect then it's best not said or shared.

i'm saying this as a well wisher. your credibilty in the thal comunity is a great help to everyone specially the thalassemics on this site. you are the first one to know about any ongoing activity, the first one to inform us and weigh the pros and cons of the matter. you've helped so many people through your work and connecting those in need with those who can help. to do that is correct but to speak about a matter that will not have any effect on us but negative is best not done.
i hope it makes sense what i'm saying, my grand mother always says think ten times before you speak and when you point one finger towards someone, four point towards you.

what ever you decide you will have my support because i trust you judgement along with everyone else.

best wishes, always!

Dear Andy,

Stand up for what you believe in....
just look at thalpal.com...and you will know...
that you are not standing alone....!
We are all here because we trust, respect and love you...
We know that you will always do the right thing...and the right thing is not always the smartest thing...we(thalpals) are people who use the heart and conscience more than the worldly wise and scheming brain...so it is important that we do the right thing even at the cost of supposed ridicule!

Love and support,
Madhavi

sorry i missed the post in the day it was written and by coincidence i was reading some of these proverbs just before i came to read this, what a coincedence

Laws control the lesser man.  Right conduct controls the greater one.  ~Chinese Proverb

A man cannot be comfortable without his own approval.  ~Mark Twain

A pure hand needs no glove to cover it.  ~Nathaniel Hawthorne, The Scarlet Letter

Better keep yourself clean and bright; you are the window through which we see the world.  ~George Bernard Shaw

Every time I've done something that doesn't feel right, it's ended up not being right.  ~Mario Cuomo

To know what is right and not do it is the worst cowardice.  ~Confucius

Goodness is the only investment that never fails.  ~Henry David Thoreau

In matters of principle, stand like a rock; in matters of taste, swim with the current.  ~Thomas Jefferson

Your life may be the only Bible some people read.  ~Author Unknown

Try not to become a man of success but rather try to become a man of value.  ~Albert Einstein


Andy, you can not imagine how much we trust you, we are backing you all the way

manal

 

Andy, you can not imagine how much we trust you, we are backing you all the way

Zaini.

Hi Andy,

I am not sure what matter you have to decide on, yes I have been out of touch for very long time. Reading your post I have one word for you 'Diplomatic' like it or not but that is the reality. Take it from a person who has to deal with diplomats every day. We can be brutally honest but usually we loose our effectiveness. Poison them slowly, make an argument, listen but keep inflicting the idea. It is hard to change people who have authorities but make the argument even if you cannot win it. Keep the communication channels on and open, don't shut the doors. By all means speak up your idea but seek feedback, that way you will engage them, let them think.

I agree with Sharmin

"The worth or standing of this group has never been rooted in the approval of any particular group or influential person - it is about helping thals - that is what we are all about"

Even if we loose we still have our integrity intact and we should keep our heads high. Again, sorry if I don't make sense as I don't know the real issue and if this post is not helpful.

Yours truly,

I want to thank those who have offered their support. It means a lot to me. I fear I have been naive in thinking that patients come first to doctors and researchers, and while this is true of some of our outstanding doctors and researchers, it should never be taken that everyone involved in finding new treatments and a cure have the patients first in their minds.

I want to say thank you to Canadian Family for the advice.

We can be brutally honest but usually we loose our effectiveness.

As much as I want to say some things, it won't help me, It won't help our group. And it's doubtful that it would make any difference at all to those who make decisions. If the time is right and the confidential nature of this issue is lifted, I may have more to say specifically. For now, I will say this.

The more I see how things work in the thalassemia world, the more disgusted I become. It is not patients first. It is profits first and those who market themselves and their products better in terms of showing potential profits are those who get financed. It isn't whose product has potential for patients. It is whose product is perceived as having the most profit potential and this is often based on who is the best salesman and not the best scientist. The result is that we end up with second rate products, while better options are lost due to lack of funding. I encourage all to challenge what makes no sense and to never accept anyone at their word when it just does not make sense.

Thank you.

Thanks Canadian family for your precious advice, it made me think about many of my personal expierences which usually don't go well all the way as i deal with things in terms of black and white.. and i had a friend who just told a couple of days ago'' if you reached this age and you cannot accept the ''gray'' you are not yet mature''   
 I guess it will take a lot of time to get mature

Andy,
Though we don't know the details of what is annoying you, but i can imagine the ''frame'' of the issue and it really scares me because it means we shouldn't trust whom we are supposed to trust and it scares me more because not everyone can

challenge what makes no sense and to never accept anyone at their word when it just does not make sense.

Sometimes despreate situations caused by chroic illiness makes one unable to distinguish between what makes  sense and what doesn't You just seek hope in anything you hear

Again thanks for keeping an ''eye'' on us

manal