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?
------------
I sure will! Thanks Jeanette,
Charlotte
> 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?
