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MSA VIDEO DOCUMENTARY

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Your input is needed on this worthwhile project. Deadline is August 31st.

Take care,

Pam

------------------

ATTENTION: People with MSA and Caregivers /

Pam Bower and the Shy-Drager/MSA list

RE: PHOTOS and WRITINGS of People with MSA

for MSA VIDEO DOCUMENTARY

Hello-

I am writing on behalf of Rainlight Films to let you know about a video

documentary we are producing about Multiple System Atrophy (MSA) -- and to

ask your help in creating A MONTAGE SEQUENCE featuring the FACES and

COMMENTS OF many PEOPLE WITH MSA.

Rainlight Films is an independent, nonprofit endeavor run by Jim Likowski

and Deb Dohm. Jim is a documentary filmmaker and has produced several

programs shown on public television. We both became aware of the issues of

MSA when our sister-in-law, Sophia Dohm was diagnosed in 1996.

As you know, having a relatively unknown disorder is an alienating

condition -- few people have ever heard of it, there are no specific

treatments or medications, research is scanty and a cure seems distant. In

the film we want to document the human element: the emotional demands on MSA

sufferers, their families, and caregivers, and the challenge of trying to

cope. Included also will be information on the medical aspects of the

disease.

I am writing to tell you about the film, and secondly because we would like

to create a sequence featuring FACES and brief SKETCHES OR ANECDOTES about

people who have MSA.

Therefore, if you are willing to VOLUNTEER and share your knowledge and

experience (Deadline: August 31), we are seeking

1) your STILL PHOTOGRAPH (or home video) and

2) a BRIEF SYNOPSIS of your experience with the disease, including what

TOOLS and METHODS of coping and caregiving have served you most

effectively --

We would be very interested in hearing what your biggest challenge or

learning experience has been; the one most important thing you would want to

say to someone who has been newly diagnosed with MSA; and general advice you

would offer to people with MSA and to their caregivers.

The film will be shown on public and cable television and worldwide on the

Internet. Our purpose in making the film is so people newly diagnosed will

not feel so alone and so those that have had MSA longer will know their

story is being told. And, to increase public awareness. The more people that

know about MSA the sooner a cure can be found. Research funding

unfortunately is dependent upon broad public recognition.

We are beginning to edit the film and plan to complete it by the end of the

year. PHOTOS and WRITINGS need to be in to us by AUGUST 31 to be considered.

Let me reiterate that the written piece can be short, as long as your most

important feelings, advice, and comments are emphasized.

We will return all photographs and videos; or you can email digital photos,

if you like.

We appreciate your help by letting your stories and faces be known! Thank

you.

Sincerely,

Deb Dohm and Jim Likowski

Rainlight Films

P.O. Box 410

Coloma, CA 95613

Email: mulesear@...

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I think it's a wonderful idea, and I see it as a tribute to my dad and all

others who've gone on before him. I've talked to my mom, and she feels dad

wouldn't have minded us telling his story. I hope to be working on it soon.

Rose

----Original Message Follows----

Reply-To: shydrager

To: " sds " shydrager >

Subject: MSA VIDEO DOCUMENTARY

Date: Mon, 29 Jul 2002 22:20:46 -0300

Your input is needed on this worthwhile project. Deadline is August 31st.

Take care,

Pam

------------------

ATTENTION: People with MSA and Caregivers /

Pam Bower and the Shy-Drager/MSA list

RE: PHOTOS and WRITINGS of People with MSA

for MSA VIDEO DOCUMENTARY

Hello-

I am writing on behalf of Rainlight Films to let you know about a video

documentary we are producing about Multiple System Atrophy (MSA) -- and to

ask your help in creating A MONTAGE SEQUENCE featuring the FACES and

COMMENTS OF many PEOPLE WITH MSA.

Rainlight Films is an independent, nonprofit endeavor run by Jim Likowski

and Deb Dohm. Jim is a documentary filmmaker and has produced several

programs shown on public television. We both became aware of the issues of

MSA when our sister-in-law, Sophia Dohm was diagnosed in 1996.

As you know, having a relatively unknown disorder is an alienating

condition -- few people have ever heard of it, there are no specific

treatments or medications, research is scanty and a cure seems distant. In

the film we want to document the human element: the emotional demands on MSA

sufferers, their families, and caregivers, and the challenge of trying to

cope. Included also will be information on the medical aspects of the

disease.

I am writing to tell you about the film, and secondly because we would like

to create a sequence featuring FACES and brief SKETCHES OR ANECDOTES about

people who have MSA.

Therefore, if you are willing to VOLUNTEER and share your knowledge and

experience (Deadline: August 31), we are seeking

1) your STILL PHOTOGRAPH (or home video) and

2) a BRIEF SYNOPSIS of your experience with the disease, including what

TOOLS and METHODS of coping and caregiving have served you most

effectively --

We would be very interested in hearing what your biggest challenge or

learning experience has been; the one most important thing you would want to

say to someone who has been newly diagnosed with MSA; and general advice you

would offer to people with MSA and to their caregivers.

The film will be shown on public and cable television and worldwide on the

Internet. Our purpose in making the film is so people newly diagnosed will

not feel so alone and so those that have had MSA longer will know their

story is being told. And, to increase public awareness. The more people that

know about MSA the sooner a cure can be found. Research funding

unfortunately is dependent upon broad public recognition.

We are beginning to edit the film and plan to complete it by the end of the

year. PHOTOS and WRITINGS need to be in to us by AUGUST 31 to be considered.

Let me reiterate that the written piece can be short, as long as your most

important feelings, advice, and comments are emphasized.

We will return all photographs and videos; or you can email digital photos,

if you like.

We appreciate your help by letting your stories and faces be known! Thank

you.

Sincerely,

Deb Dohm and Jim Likowski

Rainlight Films

P.O. Box 410

Coloma, CA 95613

Email: mulesear@...

If you do not wish to belong to shydrager, you may

unsubscribe by sending a blank email to

shydrager-unsubscribe

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