char
Frequent Contributor (1K+ posts)
Member # 8315
posted
We already obviously want to:
* support one another in getting ourselves and family members, especially our children well.
* effectively get the crucial facts about lyme into the public awareness
* work the political end for legislation and fuds
* defend, protect and retain our LLMD's
* assist our families, friends, and those we meet with lyme and co. to seek treatment
* spur forward research projects with financial
* persuade high profile persons to assist with bringing lyme into awareness
* identify,contact,educate,and persuade wealthy donors to contribute
* identify, contact, educate and persuade existing charities and non-profits to donate
* reach individuals and families that can contribute modest amounts. We learned the power of this with the money raised for the recent natural disasters. Now possible and so doable with internet.
The above are not necessarily in order of importance. I respectfully submit that we are spinning our wheels due to fact it is all absolutely crucial and many of us are trying to do snatches of it all. Not to take away from our individual and group victories already accomplished. We owe a lot to many who have been fighting this fight with great courage. You deserve more than just a thank you.
We have a committed group here with many different levels of wellness, interests, and abilities. What say we put together volunteer committees to organize into action teams to fight, work and pray on every angle?
I know we have those with the heart and talent of leadership and many, many with the heart and committment to unite and make a difference.
posted
Aren't there groups already doing this? The LDA? Local affiliates? Other already well organized groups which already have structure and management in place?
Instead of reinventing the wheel here, wouldn't it seem more reasonable for Lymenet members to actively volunteer with one of these organizations?
Perhaps part of the problem is that efforts are fractionated, and the cause could be better served if they were more concentrated enabling a bigger and more organized voice.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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bettyg
Unregistered
posted
2 good view points here.
I have no idea what has been tried before, but as I get ideas; I act on them.
Glad Suzanne posted the letter from Bill Gates org saying NO to lyme disease or ALL that effort would have been wasted where it could have been spent on another philanthropist.
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bettyg
Unregistered
posted
to the weekender crowd: what is your opinion and suggestions? thank you
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posted
My observation is that a lot of talking goes on here, but little meaningful action results. [operative word being "meaningful"]
My recommendation would be for people to stop talking about what could be done and just do something.
If the problem is, as I think many agree, that our efforts are too decentralized to have an impact, I would further recommend that if you really do want to make a meaningful contribution that you contact the Lyme Disease Association or your local affiliate and ask them how you can best be of service.
Then come back here and let others know what you are working on and see who feels well enough to help.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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bettyg
Unregistered
posted
I've been working the last hour plus on my letter to Steven Spielberg with links to Dr. Jones' case, the lyme movie being made, and the CHRONIC LYME RESEARCH CENTER IN COLUMBIA making him aware of these, and if he by chance would consider donating to these funding projects.
I need to hear back from someone first before I put it in final and forward to my connection...
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posted
Hmm. I hadn't considered Steven Spielberg. That just might open some doors. Good for you.
Posts: 89 | From AZ | Registered: Mar 2006
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Good and thought provoking responses.
Point well-taken that we can all pitch in through our local support groups. It is hard for me to get to mine with distance and sick kids. I imagine that others are in similar situations.
I lean more toward the opinion that more is already happening than just talk. The attendance at Dr. J. in Raleigh was awesome.
Are any of you with special talents in the afore mentioned areas interested in heading up a small group through a thread them pm or e-mail?
Then as designated person could post updates on progress.
Betty- contacting Steven Speilburg!!! Do any of you have contacts in the entertainment industry? I bet we have folks that can write letters and call and also some that are too sick for that but can make good suggestions as who to try and how.
I have a terrible time writing letters, but I am willing to focus on individuals needing diagnosis and heading up a support group to keep others who are interested and in need of mutual inspiration.
I want to put together some comprehensive info packs for my friends and family that say they will look at sites and don't do it for computer illiteracy and other reasons. Could use advice there as to not be reinventing the wheel as some wisely pointed out.
We have some jounalists here. hint, hint.
What about a setting up tables at events group? Helping each other with ideas and perhaps those in same area could share manning the booths, especially if one of us is having a hard day physically. Perhaps setting some goals by area... Hard for most humans to accomplish goals without structure. It is obvious to me that some of you do...
Anyone interested in heading or picking a group. Perhaps one I haven't thought of? I am relatively new, but I really want to make a difference and the structure would help me be more productive and I will wager there are others.
Posts: 1230 | From US | Registered: Nov 2005
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posted
My observation is that a lot of talking goes on here, but little meaningful action results. [operative word being "meaningful"]
My recommendation would be for people to stop talking about what could be done and just do something.
If the problem is, as I think many agree, that our efforts are too decentralized to have an impact, I would further recommend that if you really do want to make a meaningful contribution that you contact the Lyme Disease Association or your local affiliate and ask them how you can best be of service. ----
If you are unaware of the problems small lyme groups have please let me illuminate them for you.
Despite my having written "The Forgotten", a poem about the face of Lyme disease, and a book "The Singing Forest, A Journey Through Lyme Disease", and met with my Rep. Tom Petri who is the only rep from WI who is currently cosponsoring the current Lyme legislation because I asked him to; and founded a Yahoo lyme support group Lyme_league; and founded 2 web sites, www.sewill.org and www.lymeleague.com; where several hundred lymies post their stories about lyme; and all the materials I have sent the doctors who refuse to acknowledge Lyme disease; and the YEARS I have spent and still spend in family court trying to open the eyes of the LUNATICS there who won't acknowledge lyme disease; and fighting to obtain a diagnosis of lyme for 12-1/2 years and fighting many people to get lyme acknowledged as a real disability; I don't know what else I can do out here in WI.
I have hit the ceiling---asked to join other lyme groups and been declined because I don't "live" in their state (they can't see the big picture, if the support groups allow each other to join, we can share info!)
I have asked for larger groups to help promote what I am doing out here and been turned down for one reason or another. Many times emails don't get returned.
I have asked for my book to be promoted on others' sites, but although I can promote their book on MY sites, they won't reciprocate for one reason or another.
Even on this forum, I couldn't PAY anyone to either put out a press release (I have asked and seen other books handled in this manner), and/or lised in the "books" section of this site, the moderator responded that they "don't do that here", which is rubbish. I'm sorry, but you DO do that here! So I don't accept that answer.
My interests don't lie in selling books....although it might go an awful long way to giving me the ability to hire an attorney that a.) doesn't run off with our money again, or b.) get an attorney who will open their mouth and actually do some work. My interests lie in raising awareness of the horrible treatment of lyme patients in this society!
I have already sent books to key people everywhere, including but not limited to: Dr. Jones, Lisa Masterson's psych ward leaders; Senators, Representatives; doctors, and others.
I try to network with anyone and everyone. Even when we post on the lymenet groups, trolls take over and de-legitimize whatever is posted, making it an impossible task.
When the "little" people, who either like me, are too poor or too small (a force of one), and can't afford the $900 to become a non-profit are finally recognized for the work that we do, and SUPPORTED in the lyme community, only then can we band together and make a dent in this problem.
The larger groups do not offer us much support, I am sorry to say. Although LDA did post a photo of me and Mr. Petri on their web site, to date, I have been unable to get a reply on the www.lymeleague.com web site, or my book. I guess I'm not famous yet, so I'm useless to them? Just asking, not bitter.
My point is that many people are already doing everything they possibly can, but we don't have any help, and more importantly, WE DON'T HAVE ANY SUPPORT IN THE LARGER COMMUNITY. With few exceptions, of course, I have appreciated anyone who HAS helped.
How about some help out here in Wisconsin for this force of one? I have been sick for 14 years and have to spend 99% of my time fighting to be well, to be heard and to get my children back. We are bankrupt, without proper representation but I still work my butt off to promote Lyme. I am not Mother Theresa here, but I'm trying to make a point. Anyone that wants to say "nobody's" doing anything should understand the squashed bug theory, that is many of us feel like bugs to be squashed by the larger entities.
We need support, we need help, and we need volunteers.
-------------------- PJ
www.LymeLeague.com"Together We Grow Stronger" Posts: 139 | From A tiny little home office in the middle of Wisconsin | Registered: Feb 2005
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posted
By the way, the first 3 paragraphs in my reply were from someone else's post. I was quoting them, but missed how to add that part to my reply!
-------------------- PJ
www.LymeLeague.com"Together We Grow Stronger" Posts: 139 | From A tiny little home office in the middle of Wisconsin | Registered: Feb 2005
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
PJ- sent pm
Posts: 1230 | From US | Registered: Nov 2005
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bettyg
Unregistered
posted
fyi, my lengthy email to Steven Speilberg was just sent about:
Dr. Jones' defense fund; Under our Skin lyme documentary; and opening the doors of COLUMBIA'S 1ST CHRONIC LYME RESEARCH CENTER, NYC....
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posted
Nice job Betty. I'll be praying something good happens. I wrote two letters today to a local newspaper and to a magazine, but I just feel so hopeless about all this, its just so depressing.
posted
Lisi, thank you. I did hear back from my contact today who just returned from fishing.
"He will forward it to his nephew who works for Steven's DREAMWORKS production co. He didn't know if he'll see Steven directly, but why not try it?" YIPPEE
*********
When reading Dear Abby column tonight, I'd like to ask one or several of you with LYME CHILDREN ESPECIALLY THOSE WHOSE KIDS WERE BORN WITH LYME, to write Dear Abby!
1. Ask for funding for Dr. Jones' defense fund. Why should they give because he has treated 10,000 lyme children, and wants to get out of court/meeting with lawyers to CARE for these kids again 7 days a week.
2. $200,000 needed to OPEN THE DOORS on world's FIRSTH CHRONIC LYME RESEARCH CENTER at Columbia University, NYC. $200,000 was the last amount LDA PRES. Pat Smith quotes to me last month plus.
Who if anyone will accept my challenge to you since I do not have children with lyme disease ...just me and possibly hubby since he worked outdoors all his life.
Thank you so much on behalf of ALL US LYMIES in our good old USA!
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If you can send me the address, I'll write to Dear Abby. My 2 kids have lyme, were diagnosed but I am unable to have them treated due to the custody problems and their father's refusal to acknowledge their illness.
-------------------- PJ
www.LymeLeague.com"Together We Grow Stronger" Posts: 139 | From A tiny little home office in the middle of Wisconsin | Registered: Feb 2005
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
What is WITH that anyways? Booted off your own group?!!!
I'd love to share a reply I got from one group that left me scratching my head....
But I agree, as long as we aren't one cohesive force, lyme disease activism is not served in the manner that it can and should be.
We need to band together as one and set aside egos, agendas etc. Seems too divided, and lymies are still writing telling me they feel invisible. When they see my site www.lymeleague.com for example, they say "thank you for this" and sign up. But they still feel alone, and undirected and often have no place to go or anyone to turn to.
We have to stop this trend---now.
-------------------- PJ
www.LymeLeague.com"Together We Grow Stronger" Posts: 139 | From A tiny little home office in the middle of Wisconsin | Registered: Feb 2005
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