We have an opportunity to meet with either Sen Mikulski directly or her number one staff person who is in charge of Mikulski's health care agenda.
we'll be going there to speak about Lyme, and to ask Mikulski to support the federal bill to fund Lyme research.
Anyone out there in MD who wants to join in, please PM me as soon as possible. The meeting will be in DC.
And, any folks outside Maryland who want to contribute basic research you've already done to help educate YOUR Senator's staff or whomever else about why this bill is important- that would be grand too.
Please let me know....
thanks- Dilly
[ 02. October 2007, 01:02 PM: Message edited by: sometimesdilly ]
Posted by bettyg (Member # 6147) on :
Posted by sometimesdilly (Member # 9982) on :
Betty-
now, where are the folks from MD?
I'm ready to roll...
Posted by nika (Member # 6779) on :
sent you a pm
Posted by lou4656 (Member # 10300) on :
I'm with you, Dilly! Sent you a PM.
Posted by docjen (Member # 7510) on :
PM sent....
Posted by sometimesdilly (Member # 9982) on :
hi Marylanders-
what a great response! i've just finishing PM'ing back to everyone who has expressed interest in going.
we'll definitely be able to gather up a group to go lobby in person. i'll be calling her office on Monday to find out what size group will be able to go, possible dates, and whatever other information we will need to be most effective.
for folks in Maryland who can't go, or who don't want to/don't feel comfortable lobbying in person, what would be a big help is to have your Lyme stories we could hand deliver to the Senator's office.
In-person lobbying is the most effective means of influencing legislation; personal stories hand -delivered are a close second.
Please let me know if you have a Lyme story/history a group of us could deliver in your name.
thanks, Dilly
(a PS to TinCup- i'm really worried about you. please pop up to let us know you're ok.)
Posted by sometimesdilly (Member # 9982) on :
Carol/Cobweb:
you write SO well.
would you be willing to write up your/your daughter's humdinger Lyme story and relate it to the need for federally funded Lyme research?
dilly
Posted by mushroomman06 (Member # 13088) on :
Good morning sometimesdilly, its another morning and we are facing the up hill battle. My PM earlier stated I would be proud to attend the meeting and lobby with others and our Senator.
I know now that the response on this meeting will be large and there will only be room for a certain number of us.
I am not a writer, but I wish to write about my LYME experiences. Mine is different but still falls in with others. I was lucky enough to be tested positive and start treatment.
My body is responding well to treatment,but many snags still happen and will for along time. I feel so sorry for those that tested negative and are positive.
If the time comes and I can get my story to you, just let me know.
Thanks Mushroomman
Posted by Vermont_Lymie (Member # 9780) on :
Hi Dilly!
I am not from Maryland and unfortunately will not be able to join you, but wanted to say
YOU GO GIRL!
Fantastic.
I know we are going to win this battle eventually, and I just hope it is sooner rather than later. Thanks for doing all that you do.
Posted by Cobweb (Member # 10053) on :
quote:Originally posted by sometimesdilly: Carol/Cobweb:
you write SO well.
would you be willing to write up your/your daughter's humdinger Lyme story and relate it to the need for federally funded Lyme research?
dilly
Just returned from a rather intense conference outside of Philly for bereaved parents sponsored by The Compassionate Friends. Great, uplifting weekend but...
I need to do a bit of recharging before going into battle on another front.
Cobby
Posted by sometimesdilly (Member # 9982) on :
(Mushroom Man; please, by all means DO write up your story so that it can be delivered to the Senator. The more stories the better. I'll PM you my address if you want to send it to me. )
Also, right now i have no idea how many of us will make this particular visit, but it really feels great that so many of us are willing and able to go.
There are and will be plenty of occasions to go a'calling on our representatives.
Closer to home,for instance, word has it that State Rep Ms. Relentless Montgomery is renewing her campaign to give state sanction to the ISDA guidelines.
With marvelous TinCup leading the way on this as in so many other efforts, our fellow Lymenetters and folks near and wide succeeded in killing the bill last year.
That was a great win but the battle continues. We are invisible only if we stay silent. Myself, I'd rather holler, and it is always more fun to do that with a crowd.
Glad to be keeping such fine company, you'all.
dilly
ps- Vermont- you give me way too much credit; i think i'm going to have to make you a member of the Lymenet Sweetie-Pie club.
Posted by sometimesdilly (Member # 9982) on :
Cobby-
our posts crossed.
i'm not sure when we'll be going; it might well be weeks away.
if we do have weeks to wait, would you please consider writing up your story after you get some rest and fill up again?
you have a powerful voice, and this is a situation where i can guarantee you it will be heard.
dilly
Posted by Aniek (Member # 5374) on :
Dilly,
I live in DC, and have family in Maryland. I would be very happy to join you.
Posted by roro (Member # 13383) on :
I am still so sick I cannot promise anything but if I am off work that day and feeling better by then I will participate. let me know the details.
I already wrote to senator mikulski (she was very helpful years ago in saving the project I work on, saving my job) and she replied saying she would look into the bill about lyme in md.
Posted by sometimesdilly (Member # 9982) on :
thanks for being willing, Aniek and Roro.
And to you both and everyone else who has expressed interest:
would you each be willing to send me your email addresses so we can keep in touch with each other and plan by group email?
or, if you don't want to share your email address with the whole group (about 8 of us now), you could send individually to me and i can create a group email that does not list individual addresses?
this lobbying visit is shaping up to be extremely well-timed for behind the scenes reasons.
I can promise you that that what we bring to the Senator's office will actually be read, and with substantial interest, IF we can present comprehensive and educational info BRIEFLY, both in written form and while we're there.
Especially because we really have a chance here to be heard by someone in a position to act on the Lyme community's behalf, i'm thinking it would be best if we could work as a team to prepare ourselves/that info.
If others here on the board could help gather info, that would be great too!
Anyone?
dilly
Posted by sometimesdilly (Member # 9982) on :
up
Posted by shoney (Member # 9925) on :
I'm from MD, and have a lyme story to tell. Please pm me, and let me know what I can do to help. Can't make the eeting, but would like to be there in spirit!
Posted by docjen (Member # 7510) on :
Mushroomman...seems like your story might actually be powerful to include. Reinforce the argument that a positive on CDC's magical test and standard course of treatment is NOT always enough to kill the beast.
Posted by sometimesdilly (Member # 9982) on :
I've compiled a group e-mailing list so we can begin organizing, and sent an email earlier to those who are already involved.
Are there any other Marylanders with a Lyme story you'd like to go to Senator Mikulski?
Shoney- could you please PM me with your email address if you'd like to work on this project?
Mushroom man- thanks for your email address. I'll put you on the group email and forward the email i already sent out.
dilly
Posted by sometimesdilly (Member # 9982) on :
up- any other Marylanders willing to pass along their Lyme story?
by the by, to folks in other states who want to lobby their federal reps about this bill>
the LDA has done a huge and great job of preparing materials for you. check out their website!!
dilly
Posted by sometimesdilly (Member # 9982) on :
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