LymeNet Flash: VA Lyme Conference Discount

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Posted by CharV (Member # 5849) on :

We are pleased to announce a special discount for family members or significant others living at the same address (will be verified at on-site registration). Cost for the first registrant is $265 and the cost for the 2nd registrant is discounted at $195. Package will include only one resource binder.

This offer is not valid online. Please print out the PDF brochure (located on our home page - www.HopetoHealLyme.com) and mail your registrations to the address indicated by the deadline of April 1, 2005. The brochure PDF is a large file, so it will take a few minutes to download.

Or you can email us at [email protected] to request a brochure in the mail. Be sure to give your complete mailing address in the email. BOTH registrations must be received together for the discount to be applied.

We hope that this discount will enable more couples and family members to attend.

Peace and health!

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Posted by Barngirl (Member # 6391) on :

Hi there.
Can't afford to go.
I have to pay full freight on all of our medicines.
With our family of lyme, we pay out of pocket close to $3000.00. a month on meds alone. Insurance will not cover the meds.

Plese have someone tape all of the sessions so that we can buy them from our lyme support groups. Thank you.
*********************************************
Also don't forget:
MARYLAND BILL UPDATE

STATUS OF SB596

The Bill is in the Senate:

TO BE HEARD MARCH 10TH, 1:00 PM

Scheduled first reading: Education, Health, Environmental Affairs and Finance Committee

Introduced by: Senator Colburn, Dyson, Jacobs & Stoltzfus

Bill Entitled: Licensed Physicians - Treatment of Lyme Disease - Discipline - Insurance Coverage

Maryland needs your support by attending this hearing scheduled March 10th @ 1:00 PM. There will be a time of testimony (3-5 minutes max per person..pre-register with Senator's Colburn's secretary, Lynette Kenny 1-800-492-7122 ext. 3590) and everyone should bring 20 copies of their "story of Lyme disease" along with pictures (before and after, if available) to be handed to the committee members. Our representatives are asking for as many "bodies" as possible to be present to show support for this bill. Please forward this on to any and all groups in and around the Maryland area. You can view the verbiage of this bill by going to..

http://mlis.state.md.us/2005rs/bills/sb/sb0596f.pdf

WHETHER YOU CAN MAKE IT OR NOT, PLEASE FORWARD YOUR STORY TO US SO WE CAN COMPOSE A "FACES OF LYME" MANUAL TO PRESENT TO THE COMMITTEE: Lyme Disease Association Eastern Shore of Maryland, Inc., 8745 Williams Mill Pond Road, Delmar, Maryland 21875

Posted by lymemomtooo (Member # 5396) on :

BG, am doing what I can from over the line..

Posted by twoangie (Member # 1636) on :

Barngirl,

Is that hearing to only include Maryland residents who have been infected or is it open to include others who have experienced the disease? I assume it's just those from MD but thought it might be good idea to double check.

Thanks.

Angie

Posted by MammaLyme (Member # 1257) on :

This group who is sponsoring this event in VA is not a 501(C)(3) organization. That is why it is so expensive. They are giving a small amount to lyme charities and these are two professional woman.

usually you only pay a small fee say $80 to attend. The doctors come to these events for free.

Hope they are not taking advantage of lyme victims.

Posted by CharV (Member # 5849) on :

MammaLyme,
Normally I would just let this type of response go, but I feel we are getting way too much negative press for something that has so much potential for good. First of all, there is lots of speculating that we are getting rich off of this conference. Nothing could be farther from the truth. Anyone who has planned a professional 2-day conference knows that there are many costs involved.

We chose to hold the conference at the Hyatt Regency Reston in order to be able to accommodate a (hopefully) large attendance and in order to be close to Dulles Airport for those flying in from out of town. A hotel such as this does have slightly higher prices, especially in May during peak convention and wedding season, BUT, we chose this hotel because there is no need to have a rental car (there is free transportation to and from the airport) and there are over 30 restaurants at the plaza within walking distance where the hotel is located. Because we are not a well known entity in the Lyme community, we are paying the speakers a modest honorarium and their travel and hotel costs, which is not unheard of in the medical field. This was our initiative and nothing that the speakers demanded. With twelve speakers, these things add up. In addition, we have printing, postage, insurance, legal costs, food & beverage, audio visual, facility rental, website development and the list goes on and on...

We have invested our personal savings to launch this conference and we are risking even more of our savings if a low enrollment situation occurs. Not to mention the countless hours we have worked --days, evenings and weekends planning this event, while both trying to recover from Lyme disease. How many out there are willing to do that?

Both my business partner and I have chronic lyme disease, as well as family members with the disease. We also happen to have experience in planning conferences. This is our way of helping to educate the nation and our local community about Lyme. Why would we want to take advantage of people that are in our same boat?

We do plan to donate to Lyme Charities, but again...if this is a financial failure we will have no monies to give. If the most literate Lyme doctors recognize the need and value of this conference --why can't we let people decide for themselves if this is of value to them?

Fortunately, most of the feedback we have gotten from the Lyme Community and the medical community has been exceedingly positive. We would appreciate your support. Thank you.

Posted by Barngirl (Member # 6391) on :

I think it is great what you are doing. But we can not afford to go. It is too expensive.

Yes we need to educated EVERYONE.

But we also need to have the insurance companies recognize treatment and get the coverage we need.

Did you invite them too?

I can not afford to go to this conference because I am trying to keep my home.
Pay all the normal bills to stay afloat.
I know I am not the only one having money problems cause of this disease.

IS THIS A RICH MAN'S DISEASE????

I think not. It attacks across the board.

I better stop.

We need to spend this money lobbying..convincing Congress, House of Representative, Insurace Companies..not at the Hyatt Hotel.

[This message has been edited by Barngirl (edited 23 February 2005).]

Posted by lymesux (Member # 6248) on :

I'm hoping to go - worth the admission to see TC with that fruit hat on her head

Posted by twobusymom (Member # 3956) on :

CharV

I personally applaud your efforts at making this conference available. I do not think the price of the conference is expensive at all. If it weren't for having a surgery scheduled, I would put every effort into being in the front seat for this.

As a (used to be) professional woman, I can tell you the continuing education units required to maintain my liscence were much more expensive than this fee and they were speakers I really had no interest in hearing. Now this Lyme thing, it does interest me.....my parents.....my four kids...my new lyme freinds....

Keep up the work Char, if you make a profit so be it. I hope you do, as it would be well deserved. More power to you for fighting for the cause. I'm just praying another conference will be planned that I can attend.

Lots of prayers coming your way for the success of the conference.

Cheryl

Posted by TheCrimeOfLyme (Member # 4019) on :

You people are being ignorant.

While I dont agree that the cost of the attendance is all that wonderful,as I also have bills to pay, and as a matter of fact,

just received a kickback on taxes, spent it all on bills and now have a new stakc of bills.

However, I HIGHLY doubt that is CharV's problem. I also highly doubt that just

because this conference is going to happen and occur (whether or not you can be there) that anyone is going to forget to help out with the congress bills.

I dont know CharV from a whole in the ground, but the fact that you cannot afford something does not mean that you should take away what this woman has done. I doubt she is here trying to rip us all off. She COULD be, I don't know.

There has been such an air about lymenet lately it turns my stomach and frankly, I dont need the added stress that it gives to my body AND my lyme.

CharV:

I think that this is very, very wonderful and awesome thing that you have done for the lyme community. Unfortunately, due to a crappy crappy income, I cannot afford to go.

I'm sure that it will turn out very well! Do you know if there are any plans to tape any of the conference? It would be cool if we could hear some of the stuff that is said, or perhaps read notes on it, afterwards?

You may have this listed on the website, so I will be sure to check it out.

I hope the conference goes off without a hitch, and with the best of all intentions for lyme disease sufferers, just like... you.

As stated, the cost is not up my alley, but this is definately a great thing that you have done.

Good luck at the conference.

Posted by brainless (Member # 6771) on :

Any conference that has that many LLMDs is worth any price.

[email protected]

Posted by Lymied (Member # 6704) on :

CharV - Thanks for all of your efforts and time that you have devoted to organizing "Hope to Heal". While $265 is a lot of money when you are unable to work due to lyme, I believe it is a fair price for a conference.

I do hope that you record it and offer it on DVD at a much lower rate than admission so that people that are homebound or unable to buy a ticket can still have access to this valuable information.

I wished that you had offered some lower cost hotel reservation links on your site. I tried to do a little research on less expensive hotels but couldn't find one in the area and it may be they don't even exist in that area...as I rememeber Reston is a very corporate and high end area.

You are to be commended not attacked. This disease is tough and can feed anger and frustration. When a disease strips you of your livlihood, your freedom, your health it is hard to imagine spending $265 in its name - no matter how beneficial or positive the experience may be...just something to keep in mind...

I think it is FANTASTIC that there will be a symposium on lyme and associated diseases and I sure hope it catches the Presses attention...I also hope that the Hyatt will be overrun with lyme and associated disease sufferers all sharing ideas of how to change the system...

Take care...

[This message has been edited by Lymied (edited 23 February 2005).]

Posted by PinchotGail (Member # 5066) on :

Thank you Charlotte for all the hard work you and your partner are doing. You don't HAVE to be a 501 (c)3 to put on a conference. So what's the big deal?

Yes, the price may be more expensive than some of the other conferences, but you've got a heck of a line up going on and it looks great!!!

I don't understand how somebody can make the claim: "They are giving a small amount to lyme charities and these are two professional women"

How does one know this? Are we speculating? What does being a professional woman have to do with this?? Lets stop the criticism NOW!!!!!!!

O.K. I'm off my platform, g'night all!

Gail