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Camilla's letter to the editor was a convincing and well thought out
reply the column questioning the motives of advocates. And I think
Kathleen summed up very well the motivation of many to fight for the
right to pursue all avenues of research.
It is believed that there is a genetic factor involved in the development
of PD, especially in young onset Parkinson's. I have two children in
their 20's -- is there any parent with Parkinson's , or any other chronic
disease, who doesn't fear that their children may someday suffer the same
fate, especially if the research is impeded by politics, patent disputes,
and a lack of funding. We must put an end to this disease now.
I was with a group of PWP and caregivers who recently met with a local
Republican congressman and we witnessed  first hand the power of putting
a face on the disease. We were prepared to discuss all the facts about
funding, the Parkinson's research agenda, had fact sheets from PAN ready
to talk about, expecting to have at least a half hour of his time, if not
more. His earlier appointment ended up running 15 minutes late and as we
entered the office he said  he was sorry to have to tell us that he was
expecting an important conference call in about 10 minutes!! So we spent
whatever time we had just telling him about what Parkinson's had done to
our lives and our families -- 3 out of the 4 of us had been forced onto
disability; one of us had battled PD for 13 years already, and he is only
39. Another was facing upcoming DBS surgery and didn't know if his
insurance would pay for it.Most in our group had never lobbied before.
The COngressman asked a few questions, but mostly listened and then asked
what he could do. Before he left to take his phone call, he agreed to
support the requested funding for Parkinson's related research at the
NIH, Dept. of Defense and VA Parkinson's Centers, and also to join the
Parkinson's Working Group in the House of Representatives.
We also gave him a copy of "Saving Milly" which he asked us all to sign.
I don't think he had any doubts about our reasons for wanting to put an
end to Parkinson's or thought that  we were being "selfish" by telling
him our personal stories.

Linda

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