Topic: The National Lyme disease Memorial Park Project
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Dear friends,
With the passing of another victim...and the addition of his name as the 100th to a long list of names of those who succumbed to this dreadful illness...
I feel compelled to carry out Billy's wishes for a Memorial to all who have been taken too soon.
I would like to work on designing a place where the memories of those who have passed can be appreciated by those of us who remain.
If any of you would like to work on this project with me, please feel free to reply here, or to email me privately. PLEASE write ``Memorial'' in the subject line.
Thank you in advance, Melanie
[ 08. July 2006, 04:28 PM: Message edited by: Melanie Reber ]
Posts: 7052 | From Colorado | Registered: Mar 2003
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This is such a worthwhile project and you are the perfect person to spearhead the memorial. As you may have noticed, I have posted in support of such an effort.
I just wonder about the timing and whether other things don't need to take priority for the next few weeks anyway.
I am so perplexed by the lack of more involvement on the part of some of Lymenet's leading lights in the efforts for raise money for Dr. Jones' fund.
Certainly other things are more interesting and stimulating, but the compelling need for money immediately remains.
We just can't think that a celebrity or wealthy person is going to take care of us and then sit back and wait for it to happen. There are incredible, multiple financial pressures on everyone these days. We need to be very vocal advocates on Dr. Jones' behalf.
I am wondering what has happened to the people who used to send out mass emails to patients and former patients on these matters. I myself haven't heard from the usual people and am worried the message just isn't getting to people or being reinforced enough.
Back to the memorial, I would love to pass on any ideas I may have in regard to it, but not able to give it the attention it's due right now.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Dear Friends,
The LD memorial park project is well underway!
Here are few updates...
* We are at this time going through the process of establishing non-profit status and developing a Board of Directors (all LD patients)
* We are developing a website as an informational hub (friendly to LD patients)
* We are verifying the growing list of TBD fatalities, contacting families, and researching obituaries
* We have begun contacting state support group leaders to ask for additional names and state specific information
* We are researching appropriate site locations
* We are researching existing memorial proposals, site development issues, and design criteria
* We are developing our Mission Statement and Bylaws
* We are gathering ideas and brainstorming Facilities concepts
* And, we are developing the preliminary conceptual design
I am very excited about this project...and very pleased that Billy's family has embraced it. The design concept is slowly making its way from my head onto paper, and I hope to share that with you all very soon!
This will be an ongoing project; a living Memorial. My greatest wish would be for each of us to obtain a sense of ownership by participating in its developmental stages and in its continual growth.
If any of you are in the position to offer help with the researching, brainstorming, or any other suggestions...we are all ears! Also, I would like to take this opportunity to thank each of you who have already offered your help...it is appreciated beyond words.
Sincerely, Melanie Reber
``I too tend to plant trees in honor of those I love that pass away! Something symbolic to me about trees I guess, whether it be the trees branches reaching toward heaven, or just the growth year after year - signifying strength throughout all kinds of weather!'' - Billy Boesch�
"The roads are different, but the goal is one. When people reach the goal, all those who yelled at each other along the road, 'You are wrong!' or 'You are a blasphemer!' forget all possible differences. There, all hearts sing in unison." Rumi
(thanks lightfoot )
Posts: 7052 | From Colorado | Registered: Mar 2003
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
You are a wonderful inspiration to all of us. I know you haven't been feeling well.. and to do all this work, even when you are not on top of the world.. is incredible.
Thank you soooooooooooo much.
Billy is going to love it... and me too!
As for help...
Add to my list of things I can do... that I know trees and flowers (mostly wild). I also know bears and how to make biscuits.. but I guess that won't help much?
I will volunteer to do anything I can.. just find a good spot for me.. and watch me rumble.
I have planted thousands of trees over the years and would LOVE the opportunity to help with that process too.
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"Today I have grown taller by walking with the trees."
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Good morning FFWW and TC,
Thank you both for the kind words of confidence. I would appreciate your help in any capacity that you choose, but I do have a few suggestions...
FFWW, You have a strong ability to use words to get your ideas across... perhaps we can convince you to help with gathering, organizing and condensing information? That is, of course, once your previous obligations have been met.
TC, As our newly appointed Patient Liaison Director, we are honored to use your expertise in a number of ways.
Since you have already been operating in this capacity for many moons, perhaps you can work on contacting the families of the ones who have passed? We are needing additional verification for the fatalities list...and we are wanting the blessings of all families that have been effected.
I know that Phyllis and Sarah (both in CA) have information, but I have not as yet been able to connect with them to solicit help.
I also know that you are already over-extended and that your time is limited...so will you please ask for assistance with this?
Thank you both so much, Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Melanie, I can help with something technical or brainstorming. If you have something that seems up my alley send it this way, k?
(edited to add: my background is primarily graphics and signage. I also have good mechanical ability and some construction knowledge. I may be able to help brainstorm with those sort of things.)
I may be able to do some research but would have to work under someone that could teach me how. Sorry that's not a lot of help.
(But if TC makes biscuits I am sure I can eat them.)
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Dear friends,
If you are looking for some way to help- these are areas in which we could use some additional research at the moment:
1. data collection- National we are needing data on all National TBDs reported. I will provide you the CDC tables and links for National info...you will need to extrapolate that into TBD data only.
2. data collection- State same as above
Please contact me with "memorial" in the subject line.
Thanks so much! Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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posted
Hi -- just thinking/feeling outloud here...I recently visited a cemetary. As I was walking around it, I couldn't help but notice I had slightly more of a sense of that person when there was a picture of them on their tombstone. But the one that did it for me was a display of a 21-yr-old guy's interests and memorabilia -- that one expressed aspects of who he had been. That one made me cry. Somehow, I feel we need to communicate the impact of who we are and who we are losing to these diseases. I don't think planting trees or flowers, or listing names, etc are enough to communicate about us, to say we are/were all here and lost our lives because of these diseases and also a lot of medical negligence. - Robin
Posts: 13116 | From San Francisco | Registered: May 2006
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Good evening Robin,
I appreciate your comments and wholeheartedly agree with them.
My thought is to have a designated space set aside underneath each tree planted, that the friends or family may use to do whatever they choose in.
I envision each space being as unique as each person that passed away was.
Family or friends could choose to leave personal artifacts or place a bench to rest and ponder, tend the area as a garden, or choose to leave it pristine.
The upcoming website will also have links from each name to a personal page that may contain information about that person.
We do know that every voice matters...and we would like to allow for each in whatever form to be heard.
Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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bettyg
Unregistered
posted
Melanie, I just love this idea and the response of others here.
Loved Robin's viewpoint as well. Maybe a photo enclosed for ALL WEATHER CONDITIONS...just a thought out loud too! God bless you Melanie for striking up the band on behalf of the lymies/TB patients we have lost to this dreadful disease!
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Also, I would like to take this opportunity to thank each of you who have already offered your help...it is appreciated beyond words.
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