- MSA Video-today's last day to submit

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Reply-To: shydrager

To: shydrager

Subject: IMPORTANT - MSA Video

Date: Wed, 17 Jul 2002 18:55:01 -0000

This is the sort of public exposure we've been hoping for. I hope

you'll consider participating. This effort is being organized by

relatives of one of our list members, Sophia Dohm from the San

Francisco area.

Regards,

Pam

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

July 17, 2002

Dear Pam Bower,

Would it be possible to have this announcement distributed via the

Shy-Drager MSA email list?

Thank you very much.

Jim Likowski & Deb Dohm

Rainlight Films

mulesear@...

__________________________________________________________

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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