Where should we donate? Is there an ALS activist group?

[SavoringLife]

Hi everyone,

My husband, Jim, (43-years old, extreme athlete) was recently diagnosed with bulbar ALS. We are, of course, devastated by this diagnosed, but, like everyone else on this forum, are determined to stay positive and continue searching / educating ourselves about possible treatment options. Our two daughters (ages 12 & 15) need their father.

Importantly, we'd like add our voice and money to help find a cure. We also have a group of close friends and family who would like to do something. We want to turn our helplessness into positive action.

So, my question to you all is: what can we do that will have the most impact? Should we donate to ALSA? Project ALS? ALSTDI? Is there an activist group that we can join that is lobbying Washington to take more action? And, if so, what is the main message we want to carry to President Obama? Is it to give more money to orphan disease research? Is it to loosen FDA restrictions for treatment for terminally ill patients? Is it better funding for stem cell research?

We are still at the beginning stages of understanding the road blocks to finding a cure. So, any information / opinions you can share would be much appreciated!

Kelly

 

[Jennifer51]

sorry you are here, but you are in the right place, lots of advice and support and a wealth of experience. I think you will need to find something close to your heart to donate...yes this forum and the big associations and foundations. I have personally set up a fund page in the uk, where all donations, plus tax refunds go directly to the mnd ass in the uk, and it is sent directly into research... Have raised at least $30,000 in about 8 months. NOW..to your mention of activist groups. I have had a thought but dont know how to put it into practice. Perhaps someone with more computer knowledge than me could work out how to do it.
You know how viruses spread the whole world over . Would it be possible to get a message out there which spreads the whole of cyberspace on one day. Not a malicious one of course. If we could do it, then it might make the news as well.
Any computer boffs or hackers out there who could put their talents to some good use?

 

[SavoringLife]

Jennifer,

That is a great idea! You are right...there is a way to start an online viral message / petition that is not a virus or malicious in any way. My husband is a software developer so can easily start this (he's still working as his hands & fine motor skills are not affected.)

So, now the question is: what is the message that we want the world to embrace? Is it to donate to stem cell research? Is it to loosen the FDA restrictions on trials for terminall ill patients? What are the major road blocks that need to be knocked down in order to find a cure?

Best,

Kelly

 

[joelc]

Be careful with this idea. There will not be many people that would appreciate this way of promoting awareness, might do more harm than good.

Interesting idea though!

 

[CRF8]

donate

we have donated to ALSA and ALSTDI
I have to say the virus suggestion is not good

maybe webpages & links to donation webpages;
sponsor a walk or event instead

 

[JamesMcC]

Email the Presidant like I have...simple. www.emailthepresident.com
Have a great day!

 

[SavoringLife]

Thank you for the comments. I didn't mean an actual virus that would infect a computer...what I meant was a viral message that would be passed on via email (sorry...my years of marketing got the best of me). But, I totally understand your point and will drop the idea. I definitely don't want to create any negativity.

I still would like to better understand the road blocks we face in finding a cure, so we can add our voice to the solution. Can someone who has been around a while educate me? Is the problem funding? Is it FDA restrictions on trials?

Thank you.

 

[kelly]

Hello Kelly,
My hubby was 40 when he was diagnosed. He grew up in Ct...and we still have lots of friends and Family in Ct. We have donated money to Augie's Quest, and have been personally helped by ALS guardian angels. If you ever want to chat send me a personal message. Thanks...from another Kelly