Charlotte,
I think PAN is developing into a great networking tool for those pwp and
friends who want to be grassroots advocates. I have used the phone scripts
and sample letters posted on the PIE and even better are the samples sent
to me at home since I have asked to be added to PAN's mailing list. I think
most pwp want to DO something but some are so busy jusst trying to get out
of bed, dress, and get the meds down w/o negating the effect with what they
eat that their energies are diluted.
Probably the younger onset pwp and friends and families of pwp are going
to have to tell the stories of these exhausted pwp and help them advocate
for research dollars to be increased. I find it difficult to ask my
friends and family to advocate for me, but as MJF and others speak and are
covered in the media, it opens doors as family/friends will talk with me
about seeing MJF in the news.
I have enclosed letters to specific senators/reps who serve/served on
Labor/HHS appropriations committee already typed and with stamped addressed
envelopes to my family members who live in these key politicians'
districts. It is awfully hard for anyone to refuse to sign and drop these
letters in the mailbox. I know my friends/relatives are busy and may not
take time to compose their own letters. I always personalize these letters
by mentioning that my sister, or my neice etc. diagnosed at age
47........and include #'s re:pwp in USA and number of new cases(one PAN
mailer mentioned the one new case of pd every nine(9) minutes) along with
the savings in health care costs compared to raising the funding for
research. My bro in TX and an aunt in OK both sent me the replies from Kay
Bailey Hutchison of TX and I forget the OK congressman who were/are on
the Labor/HHS appropriations committee promising to work for pd research
funding increases.
Watching PIE for e-mail from Kelly Abbott or Michael Claeys of PAN helps me
keep up-to-date and know the key times to call congress and I always
followup the phone call with a letter to the congressperson contacted and
an Atten or RE: line with the name of the health aide I visited w/on the
phone, asking for a written response about what action the congressperson
has/will take for pd funding increases.
Yes, it takes hard work and alot of time to be a grassroots advocate for
Parkinson's research. The reward is in knowing I'm doing what I can to
educate and strive for a future like MJF wants....."in my 50's I'll be
dancing at my childrens' weddings". Won't you join me in making his wish
and mine for the future become reality?
Jeanette Fuhr 49/47/44?
