Posts Tagged ‘Lyme Activism’

A Forum on Tick-Borne Diseases – What’s NEXT?

// April 23rd, 2012 // 4 Comments » // Lyme Media, LymeBites Blog

A Forum on Tick-Borne Diseases – What’s NEXT?

Skidmore College  Saratoga Springs, New York May 21, 2012

Honorary Chairman: Congressman Chris Gibson

Please forward this invitation (4/6/12)

A Special Invitation

Congressman Chris Gibson (NY-20) invites all individuals, communities, organizations, or enterprises with interests pertaining to Lyme disease and other tick-borne diseases to join him for a unique public forum he will be hosting in the Zankel Music Center, Skidmore College in Saratoga Springs, New York, on May 21, 2012 from 8:00 am to 5:00pm.

The event, entitled A Forum on Tick-Borne Diseases – What’s NEXT? seeks to focus public awareness on the future of these difficult diseases. A group of speakers, leaders in their fields, will present forward thinking, problem-solving proposals to a  panel of policymakers from both private and public sectors about what can reasonably happen NEXT to advance the cause of improving the lives of people suffering with Lyme disease and other TBDs.

Pamela Weintraub, renowned author of Cure Unknown, and Executive Editor of Discover, will be the keynote speaker for this event. Pam will speak to the multi-dimensional nature of this extraordinary subject, from the patients to the politics, from the science to suppositions that define this stunning medical debacle.

Dr. Richard Horowitz, internationally renowned clinical physician and consultant in the field of Lyme and tick-borne diseases has been working with patients for over twenty years. He has seen the evolution of the diseases from the clinical perspective, and will present a proposal for a paradigm-shifting approach to the diseases that could encourage new perspectives, new synergies, and new research in this difficult subject.

Dr. Daniel Cameron, former President of the International Lyme and Associated Diseases Society, an active clinical physician, researcher, and vocal advocate for Lyme patients and improved Lyme policy in the U.S., Dr. Cameron will speak to the extreme difficulties the current medico-political environment imposes on the doctors who aggressively treat Lyme disease.

Dr. Kenneth Liegner, Dr. Liegner is a Board Certified Internist with additional training in Pathology and Critical Care Medicine, practicing in Pawling, New York.  He has been actively involved in diagnosis and treatment of Lyme disease and related disorders since 1988. Dr. Liegner will present his ideas for a comprehensive plan for dealing with the spectrum of problems that are the “Lyme issue” as we move into the future.

Lorraine Johnson, J.D., MBA, one of the best known and most highly regarded advocates for Lyme patients, is an attorney advocate on issues related to the medico-legal and ethical aspects of Lyme disease and has published over 30 peer-reviewed articles on this topic. She is the Chief Executive Officer of LymeDisease.org, and is a director and an officer of the International Lyme and Associated Diseases Society.  She will speak on the Burden of Illness, an in-depth study of what the costs are to people who have Lyme  and other tick-borne diseases and to their communities, and she will recommend research paths forward to address these issues. Lorraine authors the Lyme Policy Wonk blog, on the lymedisease.org site.

Holly Ahern, associate professor of Microbiology at SUNY Adirondack, will present the findings of her 2011 research study on the number of cases of Lyme disease that go uncounted in our “official” statistics.  Most cases of Lyme disease are NOT reported, and this number of “invisible” cases, will ultimately have a significant impact on all our communities. Multiplying the “undocumented” cases with the financial burdens of the disease foreshadows a public health crisis on the horizon.

Dr. Ahmed Kilani, President, Founder, and Director of Clongen Labs, will discuss new laboratory methods to enhance the detection sensitivity ini the testing process.

Dr. David Leiby, Head of Transmissable Diseases at the Red Cross, will speak on the concerning and challenging issue of Babesiosis now being found in the blood supply.

Dr. Edward Breitschwerdt, DVM, of North Carolina State University, will address the emerging challenges of Bartonella, one of the co-infections that is being observed with increasing frequency.

Lyme victims, their families and friends, advocacy groups, medical professionals,  business professionals, government agencies, policy makers, and others associated with these diseases or their impact on people are urged to attend to both hear what the speakers are proposing as well as to demonstrate to the public, to government, and to the media that there are a LOT of victims of tick-borne diseases.

There is no cost to attend the forum.  Information about how to pre-register and about accommodations can be found at www.lymenext.org.

What A Doctor Should Be – ©Karen Angotti

// June 10th, 2010 // 1 Comment » // Family of Lyme, Guest Authors, LymeBites Blog, Lymenaide Awareness Campaign

(The following article is copyrighted and being used in it’s entirety with permission from the author). 

Helen Raser’s friend, Karen Angotti, is the mother of a beautiful young woman, Lisa Marie, who has been sick with lyme and co’s for about 20 years. Here is one of Karen’s many beautifully poignant pieces based on her long and difficult journey in the world of Lyme Disease. You may repost this article in its entirety only, please do not excerpt it, per Karen’s request.

WHAT A DOCTOR SHOULD BE
©Karen Angotti

A doctor should be a hero, a knight in shining armor, the sheriff in the white hat. A brave, courageous defender against wanton diseases and virulent pestilences that kill, maim, and destroy. He should be someone who doggedly pursues the enemy without a thought of retreat. Relentless and determined, he fights until the last breath is gasped and the last, faint heart beat is pumped through the struggling body of someone he may not even know. For this is his mission, to fight death and pain, to endeavor to soothe, heal, and relieve. It is a thankless task for death and suffering are as much a certainty as anything in this world. For as soon as one hideous disease demon is squashed with his seemingly pitiful weaponry, another more dreadful and fierce replaces it; and the battle begins anew.

A doctor should be someone who cares more for people than for money or prestige. A doctor who does not care is like an airborne blind pilot who cannot see the runway or read his instruments. All the knowledge in the world will not land that plane without the eyes to see. And likewise all the knowledge in the world will not cure a patient that a doctor blinded by indifference and apathy cannot see is truly ill. For a real doctor will listen to his patients with a heart of concern. He will listen to all his patients not just those who are comely of form, polished, refined, and educated. And adding that working knowledge of the patient to his book knowledge and experience, he will attempt to piece together a treatment that will work. No computer can compete with this ability. For though computers can spit out a diagnosis based on symptoms and then prescribe a standard treatment, no computer has a heart that can see and hear the patient with his own peculiarities and idiosyncracies like a real doctor can. Compassion is at the heart of that indefinable “art of medicine.” Without it, a doctor might as well be replaced by a timesaving, efficient state-of-the-art computer whose memory has less capacity for error than a frail, fallible human mind.

A doctor should be humble realizing that his craft is far from perfected. Medicine is a science that is constantly changing and growing; and the modern “discoveries” of today may soon become the obsolete “discarded failures” of tomorrow. Only a doctor who is humble enough to recognize the gaps in knowledge that exist can begin to have the kind of open mind that considers intriguing, new ideas and possibilities which may become the discoveries of tomorrow. For if one thinks he knows all there is to know, he no longer looks for answers and the three little words, “I don’t know” cannot pass through the sweilling lump of pride in his throat. Pride can construct an impassable roadblock on the path to the future.

A doctor should be someone who enters not a profession but a ministry–someone who is there to serve not to be served. People (even doctors) are not at their best when they are sick and scared. Who would not be irritated by listening to endless complaints all day long year after year? Only someone who realizes that the reason for choosing this calling was to alleviate as many of those complaints as possible. And given the impossibility of curing all of these ailments, the reward must not come totally from the lessening of complaints or the adulation of patients but from the knowledge of a service well rendered. The greatest satisfaction must come from knowing that you have done your best sometimes against seemingly impossible odds. Unraveling an intricate, diagnostic puzzle, using an innovative technique, or maybe simply holding someone’s hand and saying, “I am sorry.” These are the things that make being a doctor worthwhile. These are the intangible things that make the endless complaints, petty annoyances, and invasions of time bearable.

A doctor should be someone who is honest and trustworthy. Qualities that we often ascribe as more necessary for bankers and accountants. But which has more intrinsic value–mere money or an irreplaceable life? Trust is necessary between doctor and patient or a crucial element that may mean the difference between life and death is missing. If a doctor is saying one thing to a patient and writing another in the chart or gossiping about him with other doctors and nurses, then a sacred, unspoken trust has been broken; and the breach may impinge the entire relationship.

A doctor should be someone who is courageous and undaunted by the challenges which he most surely will face. There will always be some in every profession who are dishonest and even evil, those who will use their power for gain no matter how many or who it harms. “All it takes for evil to prevail is for good men to do nothing.” In medicine, perhaps more than any other field, it is imperative that the good men restrain the unsavory. For if they do not, who else will have the necessary knowledge or expertise to do so?

A doctor should be someone who is kind and discreet for ill-spoken words can scar
and maim as surely as a knife. And because these hidden scars are indetectable by any test or examination, they almost always cause a pemanent affliction–most notably a communication rift between doctor and patient that cannot be bridged.

A doctor should be someone who loves what he is doing so much that he would do it even if he were not paid or otherwise compensated. For in this ongoing battle between life and death, God’s most precious creation, Man, must inevitably confront his soul.

To my doctor, Edwin J. Masters, M.D., who showed me that a doctor could be what he should be.
Karen Angotti

Grass Root Support Surprises the ‘Twit’ Right Out Of Us, Thank You For Such A Wonderful Surprise!

// June 10th, 2010 // 2 Comments » // Lyme PSA, LymeBites Blog, Lymenaide Awareness Campaign

twit pic To begin, let me tell you a bit about Twitter.  According to Wikipedia – Twitter, “is a social networking and microblogging service that enables its users to send and read messages known as tweets. Tweets are text-based posts of up to 140 characters displayed on the author’s profile page and delivered to the author’s subscribers who are known as followers.”

Okay, what does that have to do with anything?  Ashley and I have spoken at great length in our awareness campaigns as to the importance of social networking and media sites in getting our message out.  Look at May.  The simple idea of a campaign for Lyme awareness literally blew up across the country and hundreds then thousands of people joined in.  Do you know how many people became aware in May?  Do you know how many lives were saved because of that awareness?  A great deal of credit has to go to Facebook, Twitter and the other social media outlets for their help in helping us spread our message.

Yesterday we received quite a surprise from Chloe, or in Twitter terms @TVD_Chloe, as she agreed to donate $.05 for each new follower following her on Twitter.  Wow…we were quite taken aback, but not surprised because of the amazing support the fans of The Vampire Diaries have given us since the stars of the show helped out with the PSA’s.

Then suddenly today I saw the following tweet (that’s what they’re called for you non-Twitterers):  @luckytobesilver is donating $.10 to the campaign for every new Twitter follower she gets.

Ashley and I set about to telling people, as we were getting messages on Facebook as people were adding these people on Twitter (and raising money for our awareness campaign at the same time), we suddenly saw another Tweet pop up!  @Christi_Roberts joined forces and is offering $.05 for every new follower.

Ashley and I can’t help but be astounded at this additional boost of support.  It is a huge help to the campaign, and to what we are trying to accomplish.

But then suddenly, I couldn’t leave my computer to go to the bathroom without more people joining onto the cause!!!  People were joining in so quickly (and Twitter kept crashing today, AKA the epis whale fail, also in Twitter lingo) Ashley and I couldn’t even keep up with sharing the information with each other, let alone to keep retweeting it and sharing on Facebook.  It was wonderfl!  But to make this easier, I am simply going to list out all of the following people who are participating in this fundraising project for the Lymenaide and LymeBites awareness projects we are planning.  As this expanded it now includes Twitter and Facebook and regular websites.

Less than half of these people have Lyme.  The others became friends to the Lymenaide/LymeBites awareness cause through the Public Service Announcements that we did as part of Paint May Lyme Green.  Through their new understanding of this terrible disease, they have been prompted to action.

Twitter
@TVD_Chloe is donating $0.05 for every new follower on Twitter from 06/08-06/15
@Christi_Roberts is donating $.05 for every new follower on Twitter from 06/09-06/15
@luckytobesilver is donating $.10 for every new follower on Twitter from 06/08-06/28
@icarusalsoflew is donating $.50 for every new follower on Twitter from 06/09-08/04
@Shannahg22i s donating $.05 for every new follower on Twitter from 06/09-06/20
@CAccolaWeb donated $20.00 today, which was for her donated $.40 for the first 45 people to follow her on Twitter
@lailakhangi is donating .20 euro for every new follower on Twitter from 06/09-06/30 (she is also donating .20 euro to Gulfaide)
@thelymegarden will donate $.06 for every new Twitter follower fro 06/09 until they receive 60 followers (the donation will be split between Lymenaide and CanLyme)

Blogs
Alyssa’s Blog – http://simplyalyssadreaming.blogspot.com -  for every person that subscribes to her blog from 06/09-06/16 she will donate $.05  June 9 and June 16 she will donate .05 cents to the Lymenaide campaign!!

Facebook
The Lyme Garden – Facebook Page will donate $.06 for every new follower of their Facebook page for the first 120 fans (The donation will be split between Lymenaide and CanLyme)
Craig Bancoff – Facebook Page will donate $.50  between 06/10 and 06/17 for every new follower of his Facebook page or new member of his website, you can Register Here for Craig Bancoff\’s Website.  Now in addition, for those who do not know ,Craig “is a musician suffering from chronic, neurologic, late stage Lyme disease and would like to show our support by helping raise money for Lymenaide.”  So beyond the amount he will donate for new followers, but for the same dates if you purchase the digital download of his CD he will donate $5.00 to the campaign!  If you purchase the CD from iTunes or CDBaby he will donate $3.00 for each purchase of the CD.  To get the digital download go here: Craig Bancoff – Merchandise.

And as a show of good sport, I will donate $.10 to the Lymenaide/LymeBites campaign  for the first 200 people to register with the LymeBites website.  Click Here To Register With The LymeBites Website

This is where you come in.  Are you on Twitter yet?  If not, please join and create at Twitter account at www.twitter.com.  Then go into search and enter all of the names above on Twitter and follow them.  Just by doing that you will have raise a lot of needed money for our campaign.  I actually figured out that if you did each of the things listed above you would raise about $7.00 for Lymenaide and LymeBites awareness campaign.  If we get just 500 of our collective followers and readers to actually do all of that, we could raise $3,500 for the awareness campaign without even having so spend a cent!  What could be better than raising money for a worthy cause without spending money?  It just takes a few minutes of your time, and we really need the additional funding to be able to complete our upcoming projects.

If you are already on Twitter then please add the people listed above also.

If you are on Facebook, please go and add the Facebook people for them to donate to the campaign.  And I highly suggest everyone register with Craig Bancoff’s website to also help us out, and while you’re there check out his music…purchase the CD and we will raise even more funds!  In addition please fan our Lymenaide Facebook Page, our LymeBites Facebook Page, our Victorious Vixen website run by our partner in Lyme Nani, and Candice’s Infectiously Optimistic Blog.  All 4 of us can be followed on Twitter and Facebook also.

And to all of these fans of the campaign, as well as those with Lyme who have gotten involved, we thank you so much for your support of this cause, your help in raising awareness and understanding, as well your assistance in raising the much needed funds to continue with our awareness campaigns and save lives.

If you’d like to make a contribution directly to our campaign through a different form of payment, there is a ‘Chip-In’ section in the top right of the LymeBites homepage, you can make a secure donation via PayPal or credit card there.  For other ways to make contributions via checks*, etc., or about sponsoring our awareness projects as well as questions about our campaign please contact Ashley at ashvantol@lymenaide.com or myself at LymeBitesDotCom@yahoo.com for more information.

Together we can continue to build the strength and momentum of our awareness campaign as we prevent another generation of illness.  We can’t let that happen, please help us prevent it!!

P.S. Please check out the montage of all the PSA’s we did that was put together by Chloe to the right of the post.

*Donations made by check to Lymenaide are not subject to any service fees. All other donation avenues; PayPal, Chip-In, Causes have services fees of between 3% – 12%. That money is taken away from your donation and goes to the payment service, and credit card fees. Checks can be made out to Lymenaide and mailed to: Lymenaide – PO BOX 290 -  Tahoe City, CA 96145. Direct payments to Lymenaide are not tax-deductible. The only way to make a tax-deductible donation is through the Lymenaide Awareness Causes Page on facebook sponsored by PANDORA.

Candice Accola from “The Vampire Diaries” Lends Her Voice To Lyme Awareness

// April 27th, 2010 // No Comments » // Links To Other Lyme Site Posts, Lyme Media, Lyme PSA, Lyme Stories, LymeBites Blog, Paint May Lyme Green, Re-Posts, www.lymenaide.com

Lymenaide has an amazing post today from Candice Accola, from the hit TV series “Vampire Diaries” as she helps to Paint May Lyme Green.  Please check it out:

Candice Accola on Lymenaide

NY Team of Paint May Lyme Green Campaign Update

// April 23rd, 2010 // 4 Comments » // Lyme Media, Lyme PSA, LymeBites Blog, May is Lyme Disease Awareness Month, Paint May Lyme Green, www.lymenaide.com

For just over 3 days now I’ve been working on a post to give an update on what the NY Team of the Paint May Lyme Green campaign has been up to, and what we have planned. 

So I sat down, went over a list I made with some of the team, and started writing.  I had it reviewed by two people, who each gave me their assistance and input on it.  At that point I then had 3 versions of a post I still hated.  I promised myself before my favorite show, Chelsea Lately, comes on at 11 that I would have an update out there. 

So I began to print all 3 copies of this post, which you remember I still hate, when I realized the cord for the printer is upstairs.  Well obviously, there is no way in heck I’m about to walk upstairs for the cord, so I closed all 3 copies and I’m just going to give you the basics. 

First, let me introduce you to the players:

There is me, I’m Eric.  If you haven’t caught on to that yet then we have a lot of catching up to do, but for the sake of those who are not knew I will proceed (but feel free to email me if you’re new, I love “meeting” and talking to the people who read the site). 

So me, Alyssa of Rhinebeck, Kacie of Poughkeepsie, Kim and Heather of NYC make up the New York team of the Paint May Lyme Green campaign.  Let me point out that this is just the original group that signed on to working with Ashley here in NY.  There are hundreds, if not thousands, of other people here in NY extremely occupied in spreading Lyme disease awareness.  Some with their own campaigns, some by doing showings of Under Our Skin, and many who are helping us with our campaign in any way they can.  But after this initial group many people began to join in, supporting us in many ways.  From gathering info on whom to contact, to actually writing letters for us to send to those we needed to contact.    

Here’s a quick list of what’s of been happening:

-          We created several different groups on Face book.  One for those of us with Lyme disease here in the Hudson Valley.

-          We joined with Dutchess County legislator Joel Tyner, helping him with a petition and resolution he had presented to the county.  He became involved in his part upon hearing about the grassroots campaign that was started in CA and spreading across the country into his own county. 

-          We also created a virtual event on face book, where everyone is changing their profile pictures to something lime green.  It’s not even May and hundreds of people have already begun coming up with amazingly creative ways of painting their profile pictures lime green.  It is exciting every day to see as more and more people join in on that to spread awareness.

-          We have someone working on getting us included in Rhinebeck’s local Memorial Day parade to march in lime green and promote awareness. 

-          We are also all providing some version of our “story” to be able to share with others come the beginning of May.  We have been able to go to several support groups, in NY and CT and interview people with Lyme disease.  It’s been emotionally taxing at times hearing one devastating story after another, but it’s also humbling to see so many brave individuals willing to stand up and tell their story to help prevent someone else from going through that they went through. 

-          We’ve also been able to film several other individuals with Lyme, parents of those with Lyme, and have plans to film a Lyme specializing doctor next.  Each of them sharing their story in an attempt to help raise awareness.   

-          We are creating individual pieces of each of the people interviewed, as well as creating several short documentary style pieces using parts of all our interviews. 

-          We are providing 2 and/or 10 minute videos telling our own stories in addition to having our written stories plastered all over websites and social networking sites.

-          We have been asked to speak at some of these support group meetings on what the Paint May Lyme Green campaign is, and we’ve been able to go in and explain it to them and what we are going to accomplish with the campaign. 

-          We’ve been asked to speak at different viewings of Under Our Skin, and alongside legislators in town and or city meetings.

-          We have been helping to raise the necessary funds for the PSA to be produced, including asking our friends to donate to the cause for our upcoming birthdays instead of gifts. 

-          We have organized a few viewings of the film Under Our Skin our local areas, to be added to the many other showings already scheduled.  Dr Steven Bock has agreed to speak at some of the ones we have organized, we are very lucky to have a Lyme expert on hand to answer questions.  The flyers and emails have been going out to many people letting them know how important it is to see this film.  Some of our friends have written heart felt letters pleading with local politicians and media to please attend a viewing of this film to learn info that could save their, or a loved one’s life. 

-          We are also joining the hundreds and thousands of people in other states as we put up lime green ribbons, magnets, signs etc for the month of May to make Lyme disease visible. 

 

I think that pretty much gives you an idea of what we here on the NY team of Paint May Lyme Green campaign have been up to.  There’s still quite a few days left before May actually arrives, and then we have an entire month to raise our voices and let people know what Lyme disease can do.  Through this awareness we will save lives, or help others get their lives back. 

This campaign is bigger than any of us here in New York, or anyone in any other state.  But it is an amazing campaign, under the creative direction of Ashley of Lymenaide, and so many of us saw what an amazing opportunity it would be to be a part of something so big, and so important…and more important, so possible.  There’s no reason we can’t spread awareness of Lyme disease this month.  So we join with our friends and partners in vision across the country to get ready for May 1, when we will really get the word out about Lyme disease.  There will be no excuses by June to not know about Lyme disease.  We are going to make sure of that!

Stay tuned for more updated as we approach May 1 and what the NY Team of this campaign is doing in conjunction with everyone else across the country.