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» LymeNet Flash » Questions and Discussion » General Support » Tincup's list of lyme jobs needing VOLUNTEERS; can you help at all?

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Author Topic: Tincup's list of lyme jobs needing VOLUNTEERS; can you help at all?
bettyg
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This was buried in Dr. Jemsek's NC post, so I decided to start a new post since Tincup outlined all the "activism" jobs that need to be done on a daily basis.

Can any of you help Tincup in ANY WAY?
I only posted part of TC's reply back to Cave...so it is not complete in entire content.

TC related she had 2 neighborhood boys, 8 and 10, appear on her doorway one day asking her what they could do to help with LYME activiites. She had them work on putting labels on a mass mailing of envelopes! They had so much fun; they want to come back to TC's home again.
Bettyg

*********
Going to break up Tincup's task work for our lyme minds so folks can see what THEY ARE GOOD IN, and can volunteer on specific ideas you mentioned Tincup....


quote:
--------------------------------------------------------------------------------
Originally posted by Tincup:

"Where are the activists that need to continue to support their llmd?"

Some folks feel that they don't have time
or energy to help with Lyme activism
and that the old time activists should be..
and will be... doing all the work .

Right now.. in OUR face... we have ongoing:

Federal bills,
state bills,
legal actions/hearings in several states against LLMD's,
insurance problems,
massive duck problems,
letters to write,
plans to organize,
trips to schedule,
news articles to write and edit,
mail-outs,
emails to send and respond to,
phone calls both incoming and outgoing,
protests to organize,
conferences to get to,
local Lyme projects,
legal projects,
fund raisers galore,
web sites to update,
organizations to contact,
meetings with officials,
programs to do,
legislators to deal with,
doctors to educate,
health departments to kick,
support group meetings to organize,
new patients requesting help in numbers like we've never seen,
and detailed research, research, research.
Just to name a few.

Many of the "activists" have families to care for... while they try to care for themselves.

Many also have homes to care for,
children to feed and entertain,
doctors appointments,
other family members who are sick,
a full time or part time job,
and a REAL life that keeps passing them by while they have everything on hold in order to help others.

Many of the activists are VERY ill themselves... often much more so than others. They are VERY tired from all of the different things they are doing... and for having done them for years.

They weren't born activists. They became activists.. self taught over the years. They simply cared and tried to help OUR cause because they didn't want to see others go through what they have been through.

They are tired. They could use your help. ANY VOLUNTEERS?
--------------------------------------------------------------------------------

TC, I'll continue doing what I have done, and you know where some of my previous secretary experience has been.

1, emailing and/or calling senators/reps. on LYME related bills in Congress; funding bills galore

2, emailing Iowa governor and/or senators/reps on anything going on with HEALTH issues: lyme, diabetes, heart, Alzheimer's, funding issues, etc.

3, emailing celebrities: STEVEN SPEILBERG about funding for:

a. Dr. Jones' legal funding so he can remain treating LYME CHILDREN;

b. funding to finish the LYME documentary, UNDER OUR SKIN, I think was the name of it.

c. funding for WORLD's 1st CHRONIC LYME RESEARCH CENTER AT COLUMBIA UNIVERSITY, NYC, in the USA....we'll be no. 1 !!!

4, assisting as much as I can here on lymenet;

5, sending my welcome; here are some newbie sites to visit including TREEPATROL'S NEWBIE LINKS, etc.

6, do a lot of PM/home emails to folks helping or giving them guidance when I can;

7, promoting LYME BOOKS IN PUBLIC LIBRARIES; asking them to order this & that. They have ordered 5 for me; only 1 turn down...MOLD WARRIORS! go figure

8, writing editorials to LETTERS TO EDITOR on various LYMe NEWSPAPER articles written;

At the moment, that's what I've been up to I guess!


TC, I loved also how to 2 young boys showed up and did a mass mailing for you! More kids can help with this sort of thing.

When I was involved with the Ames lyme leadership, we have a Senior Center who does VOLUNTEER work.

The seniors put return mailing labels on LDA lyme brochures, etc.

They counted out groups of brochures: 25, 50, 100 ... saved us a LOT OF TIME.

Many became interested in lyme disease because of this.

Thanks for this post and TC's detailed list of ON-GOING projects that need to be done. Bettyg

[ 22. July 2006, 01:51 AM: Message edited by: bettyg ]

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shellbabe
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I would be more than glad to help in any way I can.I pretty much stay at home with my 2 yr old daughter all day so I have the time.I don't however know what area I could be of use?

--------------------
AND NOW THESE THREE REMAIN:
FAITH,HOPE,AND LOVE.
BUT THE GREATEST OF THESE
IS LOVE.

Posts: 35 | From Springfield, Mo. | Registered: Feb 2005  |  IP: Logged | Report this post to a Moderator
Tincup
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Oh what a nice surprise! It's late but I'd thought I'd take a quick stab at responding.

I was at the Farmers Market today.. and then looking at possible treatment center sites.

I went to set up a table at the farmers market... and hand out Lyme info there.

When I got there... I decided I must have Lyme disease.

I packed the brochures.. chairs to sit on, sample ticks, posters, decorations, tweezers, repellants, etc. etc.

But when I got there to set up the table.. after trying to find time for a YEAR to do this project...

I forgot the TABLE!!

[Eek!]

Oh well.. I set up the chairs and put the literature on them.. and used the brick walkway.. and it was fine. I spoke to 40-50 folks in detail.. and handed out lots of literature.

The Farmers Market gave me a free space in the market since I wasn't "selling" anything.. and they all had Lyme or had family members with it.. so they welcomed the idea and my efforts to help others.

Ok... now..

Thanks BettyG for making this a good deal easier for folks. I kinda "went off" about all the things needing done last time I posted (a bit overwhelmed)... yet I failed to provide any direction. Pretty lame of me! Sorry.

May I suggest...

Anyone having time to volunteer.. there are a number of things to do. Perhaps pick from the list above, one or two things you can help with. Then contact..

1. Your local support group... even if far away or in another state. If they have no need for your skill at this time.. they can put you on their list of folks to contact later as projects develop. Look on the top right.. no.. top LEFT of the board here for SUPPORT GROUPS. Click there and pick one near you and contact them to make the offer.

2. Contact the national organizations.. such as the Lyme Disease Asociation. That can be done by calling .. toll free.. 1-888366-6611

Or by emailing...

[email protected]

Be sure to tell them what you want to do and are willing to do. DON'T just say "anything". That WILL get you in trouble! HA!

3. If unable to help state or national groups.. make your own project and watch for other projects to be posted on the board.

Does your local library have a good supply of Lyme information?

Have you.. or your family written out your "story"... briefly... so it can be sent out at the last minute when we call for you to help?

Have you written about Lyme in a letter to your local paper lately? Do you have media contacts?

Can you put brochures in your car and take them to places and drop them off.. like at doctors offices, etc.. when you go out for a normal trip to town?

How about the Federal bills? Can you check the post about them and be SURE your state reps are signing on? A quick call or email is often a good start there. Nothing fancy.. just do it.

If you are a good researcher... can you put together info on one topic.. something that interests you... such as the connection between Lyme and MS? Or dogs and Lyme? Or prevention tips? etc. etc. etc. When done.. it can be posted here and at other sites.. dog sites.. chat groups for MS, Parkinsons, fibromyalgia, etc.

Melanie has asked for help with the Lyme Memorial project.

Dr. Jones and Dr. J in NC may need a nice note of encouragement.

Contact your LLMD via nice note and thank them. It IS what keeps them going!!!

There are other projects.. some now.. some will be later. If you see a request for help.. and there is anyway possible to do something.. please do.

Again.. thanks BettyG.

And everyone who helps others. Each one, reach one.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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trueblue
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quote:
originally posted by Tincup:
Can you put brochures in your car and take them to places and drop them off.. like at doctors offices, etc.. when you go out for a normal trip to town?

Ok, here's a perfect example of something else I CAN do. But where do I get brochures? (I'm not trying to be dense, I really don't know.)

--------------------
more light, more love
more truth and more innovation

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bettyg
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trueblue,

Great Question! Tincup showed Pat Smith, the LDA PRESIDENT's email address, send her a note asking for 50 or 100 of their brochures:

Lyme Disease Asociation.
That can be done by calling .. toll free.. 1-888366-6611 Or by [email protected]

1. ABCs of lyme disease;

2. LYME [R] PRIMER, readiness thru recognition, prevention, & education ....

info on co-infections:

lyme disease, babesiosis, ehrlichiosis, bartonella, rocky mountain spotted fever, and tularemia;


LYME DISEASE FOUNDATION
1 FINANCIAL PLAZA
HARTFORD, CT 06103

HOTLINE: 800-887-LYME; 860-525-2000
www.lyme.org

There are charges for this brochure:

. Tick-spread diseases; which is a LYME DISEASE RASH; shows examples galore.

discusses: ways to donate; LDF programs & good works; info on ticks, preventing tick bites; removing ticks; reducing ticks on property; reducing mosquitoes; lyme disease; LD diagnosis;

LD clinical diagnosis....general; skin, brain, heart, blood vessels, lungs, eyes, joints, muscles, liver, stomach, intestines, spleen, and pregnancy..

LD testings, ANTIBODY TESTS, false negative/positive; drect detection tets; LD treatment;

TALKS ABOUT ALL CO-INFECTIONS, & about educational materials ... lists them all and the cost to buy each/quantity involved.

Materials include and $$ amounts you pay:

lymelight newsletter;
tick wallet cards;
poster guide to LD;
everything you need to know about LD;
LD what you should know 60 MIN. VIDEO;
LD what you ahould know 30 min. VIDEO;
community education slide show;
what LD is .. prevention poster;
faces of LD 27 min. VIDEO;
LD & pets;
many faces of LD book of stories of patient experiences;

comm. education programs:
the works .. multi-piece display;
comm. ed slide show;

KID/SCHOOLS
LD facts for kids.. 4-18 min. videos;
LD scientific investigator program, video, etc.
LDwhat you should know 28 min. VIDEO
school distribution program;

WORKPLACE ed programs 28 min.VIDEO

SCIENTIFIC/MEDICAL
self-help program . 30 min. VIDEO
satellite medican conference; 3 hr. VIDEO;
journal of spirochetal & tickborne diseases;
TB disorder packet
LD scientific packet;
LD chronic packet;
conference compendium;
LD scientific slide show;


PFIZER has this FREE BROCHURE:
lyme disease & related disorders/co-infections
www.lymediseaseinformation.com


IGENEX DIAGNOSTIC LAB has their blue LD brochure. I also asked for their CURRENT PRICE LIST to go with EACH of their brochures!

Discusses:
hiw lyme is transmitted; if I suspect exposure; what are the symptoms; how is LD diagnosed; can ticks be tested; are there other TB diseass;

what tests are available: ELISA, WESTERN BLOT IGM/IGG, lyme dot blot assay, and PCR, polymerase chain reaction,

what test is best & names all; what is the treatment; can LD be prevented, & how to remove a tick.

www.igenex.com
IGENEX, Inc.
797 San Antonia Road
Palo Alto, CA 94303

800.832.3200 toll free;
650.424.1191;
650.424.1196 FAX


Bettyg's recent LYME BROCHURE from LDA and Betty's addition of books, etc., and EDITED by Ann - Ohio. You could forward this to anyone you meet and online to family, friends, etc ... you've got the picture now, right? [Big Grin]

I've had a table set up 3-4 times now, and was ready to write down anyone's EMAIL ADDRESS to send them the most recent info I had vs. something I had printed 100 copies of 3 months ago with some mistakes in it.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=045337

I hope this helps you/others who read this! Thanks for asking this important question! Bettyg

[ 21. July 2006, 02:31 PM: Message edited by: bettyg ]

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trueblue
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Thank you very much, Betty! [Smile]

--------------------
more light, more love
more truth and more innovation

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bettyg
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added just now to previous list of brochures, etc:

Bettyg's recent LYME BROCHURE from LDA and Betty's addition of books, etc., and EDITED by Ann - Ohio. You could forward this to anyone you meet and online to family, friends, etc ... you've got the picture now, right? [Big Grin]

I've had a table set up 3-4 times now, and was ready to write down anyone's EMAIL ADDRESS to send them the most recent info I had vs. something I had printed 100 copies of 3 months ago with some mistakes in it.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=045337

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lymie tony z
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I'm not too good on the computer...

however I have a whole box(2000 or so) of the ABC'S of lyme and am passing them out to churches and schools, pharmacies and bowling alleys.

Wherever I see kids.....

I need to get more of the Prime R pamphlets.....

Anyone reading this please send me a couple thousand or so...

I'll pm or network with advice around here...
(even though I've been a little grumpy of late)....

I also have called the politicians......or emailed.

I would like to set up a table someday but I need to get more Prime R pamphlets first...

Forgot your table.....LOL that's great...Hahha!

Anyway...I'm not blowing my own horn here...just letting ya know I'm doing what I can...zman

--------------------
I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman

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bettyg
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Tony, I sent you a PM about the brochurs, but I want to emphasize it here publicly....

please send any requests for BROCHURES, etc. directly to the people involved I have listed above ok!

In Tony's case, he needs to email Pat Smith at her email shown above.

Tony, we lymies appreciate all of your efforts & those of others in whatever capacity you are able to do things as sick as we all are! Take care all. [hi]

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bettyg
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up to remind folks to take our brochures to parades and other events happening in your communities .... thanks so much! Bettyg
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livinlyme
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Bettyg,
I was looking at this the other day I want to help but right now I am haivng trouble helping myself..
as soon as I get it together
I will jump on board but before this I will be writing news stations and prophecy telling of our family history with lyme and how my husband has an autopsy report listing Lyme as a cuasative factor ... only BECAUSE!!!!

because it might open more doors to defend.. but it will open the eyes to why this is a major concern for not just those bitten by ticks...

but those born to those bitten by ticks and I don't just mean any ol tick but those infected which I think most are...

I think, therefore I AM!
LOL [Eek!]

--------------------
"Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it."

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bettyg
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livinlyme,

YES, you ARE doing that as we speak! You are educating others by writing your story to newspapers about you and your 2 sons with lyme plus your husband and Dad having died of lyme also!

Yes, your hands are full with everyone we have discussed privately. We do NOT ask anything more than what you are doing right now.

BUT take care of your health; we can not do that for you long-distance online.

The stress you are under with so many things happening is the straw to break the camels back ... so do what you do to destress yourself right now ok!

I was surprised to see I had a feedback from you on this one BEFORE I read your reply.

We thank you for everything you are and have done in the past! You're doing an outstanding as sick as you/boys are. Hugs & kisses to you...
Bettyg [group hug] [kiss] Bettyg

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