Dear Mary and Gina,
I think your ideas are wonderful. And I think that properly planned and
worked out, they just might work.  The only problem is:  who is going to
coordinate it?
Hilary Blue

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Mary Sheehan wrote:
>
> Great idea, Gina.  I have always thought that what we needed was a "grand
> gesture" to bring attention to the needs of the PD community... something that
> will bring national press coverage.
>
>   In other words, we need a gimmick.  Your photo
> idea could be just as effective as the AIDS quilt in educating people about PD
> and garnering sympathy for our cause.
>
> I have a few more suggestions for everyone's consideration:
> 1.Have PWPs, caregivers and family members send in their photos.
>
> 2. Each photo should be pasted on [or scanned onto] an 8x10 piece of paper
> which includes name, number of years since onset, age at onset and a brief
> statement of how PD has altered your life.  Caretakers and family would of
> course, explain how your PD altered their lives
> .
> 3. Send copies of the photo page to your congressman, senators, director of
> the NIH and members of the Appropriations Committee.
>
> 4. Try to have all the photos arrive on the same day in September to make the
> greatest impact.
>
> 5. If there could be a meeting that day in Washington of young onset PWPs and
> some Udall supporting senators and congressmen, that would be excellent.
>
> 6. See if you can get permission to display all of the photo pages in the
> Capitol building.
>
> 7. Call a press conference.  Invite Mohammed Ali, Janet Reno (she's probably
> in the neighborhood), Morris Udall's family, etc., to submit photo pages and
> to speak about PD and the need for research money.
>
> I firmly believe that with a grand gesture such as this, we'll finally get
> recognition (perhaps even become the disease du jour for a while). This may
> seem like a lot of work but if it's divided into small parts, with different
> people in charge of each part, it's definitely do-able and could finally get
> some of us on the Oprah Show.
>
> BTW, we should aim for at least 3000 different photo pages (2 each per list
> member).
>
> What do you think?
> Mary Sheehan