Anyone willingly to help a screenwriter?

[sonja123]

Hi! My name is sonja bennett and I am a vancouver based actress. I am currently writing a script about a relationship between a man with ALS and a woman that is hired to drive across Canada. I would love to chat with some one living with ALS. It would be really helpful to me. Is there anyone out there that can answer some questions for me? If you want to know more about me I have a website at www.sonjabennett.ca
Please add to this thread if you are interested......You'll get a film credit!
Looking forward to your response,
Sonja Bennett

[Ontario caregiver]

Hello Sonja

My husband has survived ALs for 8 years we may know alot about the disease in all aspects, emotion, fear, stress, laughter about death, hope, etc. the stress on the ALS patient, caregiver, family.

[Al]

I'd like a few film credits to add to my resume as well. I can be reached with a personal message here or at al.pettit@alsforums.com . I've been diagnosed since Oct. 03.
Al

[ladave]

Don't know what I can add but I'd be happy to communicate with you, send me a pm through this site if interested in reaching me.

[David]

Has anyone heard back from Sonja?

[Al]

Yes I have. We have a call set up fot Thursday.

[ladave]

Sonja and I have exchanged emails. I hope her project is going well.

[rcharlton]

Dave and Al just want to see their names in the credits. They'll be right next to "key grip".

Be sure to tell Sonja about the drooling - I think I good drool sequence could be used for poetic effect...

...and having to ask others to pick your nose for you - a good nose picking scene could be a real bonding moment for the two characters in the film...

[Al]

Thanks guys I'll be sure to mention that when she calls. A film credit is good on a resume in case you want to look for a job.

[Al]

Ok the nose pick is in for sure and the drooling. My wife Lee and I spent an hour chatting with Sonja and she is a lovely lady to talk to as well as being quite attractive (see her website) and no I'm not advertising. We talked about the day to day things affecting us and she said we were telling her the kind of stuff you just don't find in the manuals. Hope the screenplay comes out soon enough for us all to see the movie.

[Al]

Sonja if you are reading this could you email me at al.pettit@alsforums.com I have a question for you and want to tell you about an NFB film that is available about ALS. Thanks. Al.

[Thelma]

Why in the world would anyone who has no knowledge of ALS take or want to take on the challenge of doing a script and soliciting information from patients for it.

Is it a new trend or something.

She can wait for Ben Byers documentery or see the Heywood brothers one.

But not knowing or understanding ALS is one thing but to write as if you do is another.

This I got to see.

[Al]

In defense of Sonja I will post part of an email she sent me. As for my idea.......I don't know. I
wanted to bring two very different people together. One that only used their
body and not their mind and the other that only used their mind and not
their body......and then it just evolved....into someone that couldn't use
their body....I'll let you know if anything happens with it
So that is where her idea came from. She doesn't know if it will work but is willing to run it up the flag pole and see if anyone salutes. Pardon my ignorance but I know nothing about Ben Byers or the Heywood brothers but I'm not dumping on their idea until I see their work. There were mixed reviews of James Woods on ER playing an ALS patient. He did interviews with a half dozen people with ALS to get a feel as they say for the part. Where did the writers come up with that script? I'm sure none of them has ALS. It brought a lot of public and media attention to ALS.
We need attention focused on us for money and a cure. I don't think we are a trend I just think we are now coming out of the dark ages and possibly into the limelight.
Personally I'll take all the help I can get and they don't have to have the disease either.

[TBear]

The question is rather why wouldn't a person, who has limited knowledge of ALS consult with those who live it every day? Sonja appears to be reaching out to PALS and CALS for input to her project... and I believe have much to offer. Maybe she's not doing this for all of he altruistic reasons that we, as participants here would hope, but, as Al indicated... anything that raises the profile of ALS as an affliction is a positive step and I believe supported!

T.

[ladave]

I have exchanged several emails with Sonja. FWIW she seems sincerely interested in portraying a character with ALS correctly. Why this would lead to criticism I do not understand.

Also, since the James Woods ALS episode was mentioned, I recently met with someone from the Los Angeles Chapter of ALSA. The subject of the episode came up and she told me that Woods and the ER folks consulted closely with the ALSA and he did indeed speak to patients at various stages. Personally, the show aired the week of my EMG when I was told I probably had ALS and I found it both enlightening and terrifying.

[Thelma]

It is not criticism as there is no product to critique. What I am saying is just this.

I would like to see a movie etc of someone who is a full fledged human being who has wit and intellegience that radiates from him and his disease. Not in spite of his disease but irregardless of it.

I know the one that is going around now in the US is about one person and his disease and his efforts to find a cure. But this is not in any way the story of anyone I know who has had Als. Many so called treatments have been used by this person and they have failed and cost a lot of money for the people and families who are suffering by his relating the supposed benefits he thought he would receive. Yet all know now it was a false promise and yet still support him because he brings publicity to the cause for the Cure.

To some he is a hero and to some he is a charlatan but a good charlatan because he has ALS.

To the general public he is not a hero. Just a patient of another disease that needs to be looked at.

The other one is in a different bracket of his life experience in that he and his whole family are involved in finding the Cure for him and all others as well. No selling of any products involved in this one.

What is the public to think about all of these so called revelations that are being produced by the varying medias.

Do you really in your heart think another one is in our best interests. I don't unless it is different and carries a message that is really not a message that is as decernable as those of late have been.

All that you could ever want to know about Als is out there to see and read. Do you really need to have personal contact for that information? So what is the purpose of it. As you know all of us are distinct and individual with as many problems that are unique to us as are to any other living human being.

So what I mean is tell the story of You or YOu or YOu or anyone who has had some kind of experience that makes you interesting and appealling to the general public.

Get the story told that relates to the everyday man and his teen children. That is where our help will come from.

Find a handicapped HERO.

There was one in a movie about a man in his wheelchair witnessing a murder from his window, I think it was called Rear Window or something like that.

But it sold and made Millions of dollars and that is where the Cure lies. MONEY

I think you all may find me negative on this but there has been a lot of publicity lately in the Parkinsons area that has me irritated as well.

MJF and ALI had a Katey Couric special lately and the clips of MJF were from old interviews he had done in the past all put together for the most they could get from them once again. But to me it leaves a sense of the ends serving the means.

Do we really need to go that route. I think of a man who is in a wheelchair and has been vented for years being set up by a fully capable man to start an arguement with him and using subterfuge and dishonesty to have him barred from his main area of communication. This man too is ill BUT and this is a big BUT still had and still has no sympathy for this man and his life with ALs.

To me that is life. Not as I want to live it but as some do and are. When there is no sympathy from one who suffers like you how are you going to get results from a well human being who can not respond to your predictament.

If you can't appeal to them then you formulate that which they find appealing.

Give them a HERO who is or becomes handicapped. Not in a moment like superman but in a few years like lt really happens.

Mentally.......emothionally.........phys ically.........and most of all intellectualy..........then and only then can we tell the true story of Amyotrophic Lateral Sclerosis.

Gee I hope I made this clear this time because if I go back I will in all probability erase it.

Thank you for reading

Thelma

[Al]

Thanks for your input Thelma. On the same note we have a lot of new members and if you want to see a realistic portrayal of ALS, the National Film Board of Canada put out a documentary in their Bearing Witness series about Robert Colley Donahue an ALS patient. The NFB film crew followed him around for three years and were with him until he went into continued care 9 months before he passed away. It is a very moving story. The DVD is about $20 Canadian and is available from the NFB website. Have a good day. Al.

[David]

My sister sent me this information about a docu-drama being showcased at the ROM (Royal Ontario Museum).

For those close to Toronto you may wish to visit the public screening; I'm not sure about the availability of the DVD or VHS, if such exists.

The viewing is May 2nd and May 5th; the cost of tickets is $10. More information is available in the attached PDF.

This seems related to this thread so I've included it here - if there's any interest or replies I will split this over to its own thread.

The docu-drama is titled "So Much So Fast" and may be an interesting viewing; I hadn't planned on going to see it, but if anyone here wants to know more about it please let me know and I will make a point of buying a ticket and going to the screening.

Here is a synopsis of the film:

"What would you do if you were 29 and found you may only have a few years to live? So Much So Fast is about the remarkable events set in motion when Heywood discovered he had ALS, the paralyzing neuromuscular disorder also known as Lou Gehrig's disease. Made over five years, So Much So Fast tracks one family's ferocious response to an orphan disease, the kind of disease drug companies ignore because there's not enough profit in curing it. In reaction, and with no medical background, Stephen's brother Jamie
creates a guerrilla science research gro up, and in two years, builds it from three people in a basement to a multi-million dollar ALS mouse facility, the largest anywhere. Finding a drug in time becomes Jamie's all-consuming obsession."

I do find it interesting that this was said "the kind of disease drug companies ignore because there's not enough profit in curing it"; how do you feel about that statement?

[TBear]

... it's the kind of statement that makes sense and is easy to make... but difficult to prove. Someone once called it an orphaned disease and different fom MS because the sufferers often just disappear. I think that any campaign or exposure like this, that puts PALS front and center is a good one and needs to be supported. I know that you guys out there hate being gawked at, my wife sure as heck did. But its better than hiding away somewhere waiting for nature to take its course.

CHeers

T.

[COlisa]

Speaking of movies, I was warned about taking my hubby to "Friends with Money" (new Jennifer Aniston movie) as there is a running gag throughout the movie about miserable, rich people who are just grateful that they "don't have ALS or anything horrible like that".

Probably pretty minor to the average person, but my sister-in-law said it was just too much for her to take.

Anyone actually seen it? Was it bothersome/offensive?

Lisa