CN Tower green for Lyme Disease

Groups in green -- but covered in jackets, scarves and coats against the unseasonal chilly weather at the foot of the CN Tower! That was the scene in the heart of downtown Toronto, Ontario on the evening of May 17, 2014.  We gathered to wait for the promised green lights on the CN Tower, the tallest freestanding structure in the Western Hemisphere.

 Little groups gathered, some greeting others and generally just talking, catching up, making new connections and finding support networks as we waited for darkness.

 Around us were thousands of young people, running around in very scanty outfits, getting ready for a concert in the Rogers Centre (formerly Skydome). We were amazed, and pulled our jackets closer around our shoulders!

 Robin from City TV arrived and took footage of the gathering while we settled in for a group picture. He received an education during the interview, for sure! He left with pictures of the large tick we found on the dog in Whitby last year (see this blog post), a T-shirt from the Brampton LymeWalk, tick cards and brochures from CanLyme to hand around the office. There was a news clip on the 11 o'clock news, with great footage of the Toronto skyline with the green tower standing proud and tall above the buildings and glistening on the water of Lake Ontario.

These collages just try to show the groups of people, the photographers trying to get a good shot (and a chilly bum in the process), Arno chatting to Robin and the scene at the foot of the tower. Hopefully the passers by took notice, and some did stop to talk and ask questions!

Collages created to combine shots -- click on the picture to see a bigger view.

Combination picture of the tower as it got darker can be seen below. Not an easy picture to take, for sure,

but more are coming. This is just a sample to show what happened in Toronto. Many couldn't attend, so the 30 who were there really represent hundreds of people suffering from Lyme Disease, too sick to get out, too weak to get around by themselves, and probably too depressed to even consider joining others.

May the day come, soon, that we all might stand up and get the treatment we deserve to get well again, to reclaim the months and years that were stolen from us because of this treatable, preventable illness, and that there will be research done to give the answers we are still trying to find ourselves.

MAY: Lyme Disease Awareness Month. 

 

 *Green prayer shawl made by good friend Sue.

Third annual Brampton LymeWalk

Hard to believe, but the LymeWalk is over! Once again a success, thanks to friends, volunteers and people trying to give the help and support we Lymies so desperately need.

Some pictures help to tell the story. The T-shirt features our usual Brampton tick and the Lyme green awareness ribbon.

People started arriving from around 9 am, many to register in person because they had a lot of trouble registering on the Running Room website. Tables were set up with information about other Lyme groups, to share and connect. 

Of course the Lyme Mobile was there to be admired, draw attention, be photographed and lead the Walk once we started! Thanks as always to Colony Ford for this wonderful tool to create awareness. 

People gathering around the registration table, buying white T-shirts, making donations for bracelets or green T-shirts and decals for a vehicle or window. 

The help of my patient, supportive husband is invaluable with all these Lyme awareness events!

Various green decorations made their appearance to get the point across! This young girl sported bright green nail polish and partenered that with one of the green silicone bracelets. 

Even the dogs had green ribbons! 

I made earrings out of green silicone bracelets. Green socks, shoelaces and sunglasses featured on several participants. 

Thank you to so many helpers and friends who gave their time! 

The silent auction table had many items, but several were not sold. Kijiji might have to help out here!

Time for pictures before the start of the Walk. 

The Lyme Mobile nosing through to lead the way!

Remember that the CN Tower in Toronto, both Falls in Niagara Falls and the Peace Bridge in Fort Erie will be bathed in green lights for Lyme Disease Awareness on Saturday, May 17th from around 9 p.m. There will be groups of people wearing green at each of these locations to hand out information, make noise, take pictures and to create awareness about this fast spreading disease. 

• View some pictures from 2013, when the CN tower went green and we attended in good spirits, despite the sudden cold! LINK  of some digital pictures and (2) LINK of SLR pictures
• Pictures from 2013 when Niagara Falls went green: LINK 

NOTE: There are T-shirts available if anyone would like to order one to be mailed. There are green shirts from our previous events as well, available for a donation and shipping costs. Most sizes left are L, XL and XXL

Worldwide Lyme suffering

May is over. This was one of the busiest but also most rewarding months, creating awareness around Lyme Disease. People from all over the world took part in events, told their stories, stood up and asked for support, better tests, the right to treatment and the right to live their lives. I'm so grateful to have met so many people, working together, giving what time and energy, ideas and support they could muster so that others would be spared the pain so many of us had to live through.

Charlotte Therese Björnström from Sweden, who has suffered from this awful disease for 25 years, put together a video from footage, pictures and sound clips people sent from all over to create a small glimpse for others to see and share. There are voices from Australia, USA, South Africa, Spain, Switzerland, Finland, Germany, Canada .... translations are part of the film. For your own education, please take twenty minutes to watch it and to share with others:



The original music used as soundtrack in this video was written and performed by a young woman battling Lyme Disease herself. She is 19, lives in Australia and has been sick for ten years -more than half her life. Her name is Emily Madden*.




Right These Wrongs
We've been through a lot, we've been through it all, 
One day we stumble, the next day we fall.
Like anyone else we had dreams. 

Our lives were alight, once burning bright. 
Now fading each day is an uphill fight. 
And like anyone else, we want life. 

Join us one, join us all. Unified we stand tall 
Our voices loud, our resolve strong.
Join us one, join us all. Unified we stand tall. 
To regain our lives and to right these wrongs. 

Identities lost, but only for now 
'Cause through all this pain, a strength has been found. 
And with everyone else, we'll be heard ...

Join us one, join us all. Unified we stand tall 
Our voices loud, our resolve strong.
Join us one, join us all. Unified we stand tall
to regain our lives and to right these wrongs. 

We're not disappearing like they want us to. 
We're not going anywhere, anytime soon. 

SPREADING WORLDWIDE
This disease is spreading way too fast, and none of us can understand why we have to struggle so to get tested, diagnosed and treated. If diagnosed and treated early enough, it is completely curable. If left to ravage the whole body, nervous system, and all organs, it takes much longer to get under control. The treatment itself can do damage to the body, just like cancer treatment causes people to lose their hair, nausea and possible damage to healthy cells.

We are not trying to create panic or pandemonium. We want people to be educated and informed so that they can protect themselves. Look at it as giving you a safety belt or a parachute - what you do with it, is your decision.

Next event I'll be handing out information, with the help of friends, will be at Caledon Day on June 15. If you are anywhere near the counties of Peel, Halton Hills or Caledon in Ontario, see if you can drop by. Entertainment is free and ends at 11 pm with a fireworks show.

*Emily's story link: Emily's sick but Australia doesn't recognize her disease

Proper CN Tower pictures

As promised --- here are the best pictures taken and worked on from the CN Tower going green for Lyme Disease awareness on May 11, 2013. We were saving them for exclusive use by newspapers, but after two weeks, nothing --- big surprise. So, here are the pictures.

The earlier pictures from that cold, windy, blustery, FUN evening were posted on THIS LINK here on the blog if you haven't seen them yet. If you click on a picture in the blog, you should be able to see a bigger view. If you use them elsewhere, please let me know? It would be fun to link them together!

We were gathering at the foot of the CN Tower from about 8:00 pm on May 11. We had to move around quite a bit to try and keep warm! But we had a lot of fun and met up with a lot of great people.

Group shot without the tower in the back. Poor hubby, who was taking the pictures, had a difficult job getting us all to stand still, and to avoid the bright lights in the background!

 It was cold and windy, can you tell? Middle of May and we were wearing several layers! But we were in high spirits, as you can tell from this shot with Mary and Debra.

Love this shot with Patricia, wrapped in that pretty scarf and holding a CanLyme flag!

CN Tower --- the group shot! I was holding back on these pictures to give exclusive use to interested newspapers, but as usual, they didn't go with the story. We just have to keep pushing.

What a month this was for Lyme Disease Awareness! Together, we all make things happen and more people have to take notice. 

Brampton Lyme Walk 2013

What a weekend! So much happened around Lyme Disease Awareness and nothing would have been possible without the help of friends, family and adopted family, Lyme patients and their families and various people who took on the cause as well.

If you haven`t seen them yet, please look at some of the pictures taken the night before at Niagara Falls, when green lights helped to raise awareness about Lyme Disease. LINK 

Saturday morning, May 18, dawned beautiful and slightly cloudy, just right for the hard work of setting up for the Awareness day at Chinguacousy Park in Brampton. Some of the pictures are shared here, but there are lots more to come. At the end of this post is a link to see more pictures in an album if you like.

The view from the pavillion where we were set up

 We started carrying tables and setting up, waiting for others to arrive and claim the spot where they wanted to be in order to talk to people attending the Walk. We had shade, a view of water, a slight breeze - it was gorgeous.

Such a great space to plan the layout! 

 Various friends arrived from towns all around to help plan, move, hold down table cloths, tents, brochures, snacks, T-shirts and more.

Young photographer on duty. Her pictures will follow!

 Rebecca was on duty with her camera, but also played with my cell phone - where she found a filter to only make anything green in colour and the rest in black-and white. Quite an effect!

Jim Wilson and Councillor John Sanderson - with Poutine sweatshirt!

 The Lyme Mobile attracted a lot of attention! Everyone wanted their picture taken with it. Councillor John Sanderson was there from the start, helping us set up and talking to various people.

Registrations 

 Friend Rouxline helped people fill in their registration forms and sign waivers if they haven't done so online, and then another table handled the registrations, bracelets, and T-shirts.

Gathering around the Lyme Mobile for a group shot

 We were planning to start the Walk at 11 am, but so many people walked on to register that we were getting later and later. No matter, everyone was in high spirits and had time to talk to many other people, create support networks, get advice and sign more petitions to ask for a change in how Lyme Disease is handled in Canada.

And they're off!

 People of all ages took part! It was so great to see families out for the event, sharing and caring together.

A stream of green behind the Lyme Mobile

 Kevin grabbed my camera and took loads of pictures as the walkers went around the park.

Picture taken by special request: Val and I with John 

 The park personnel was wonderful, helpful, supportive and eager to bring whatever we needed. They helped us carry the heavy stuff, set up tents and even find a lost walker .... Thanks to everyone, Val!

I wanted a picture with all the guys! Court Steggles, Jim Wilson, Kevin Sherriff and Dr. Ernie Murakami

 Court is the outgoing president of the LDAO (Lyme Disease Association of Ontario), Jim is the president of CanLyme (Canadian Lyme Disease Foundation), Kevin is the president of LymeSavers and Dr. Ernie is the founder of the Murakami Foundation.

Glass pendant made by Sheila in the UK

The lovely glass pendant with rainbow elephants attracted a lot of attention! To see more of Sheila's work, including cards and sterling silver, go to her link Handmade by Sheila. Thanks, Bendoggie!  (We met online years ago, and in person in London, England ... where our group had so much fun that the five-star hotel kept dropping stars and ended as a B&B by the time we all left again!)

Special paintings done in South Africa for the Walk --  limited copies available

If someone reading here would like a copy of the lovely watercolour froggies done by Karin, please contact me and we can work out something. These were sold at the Silent Auction, but more people wanted to buy some. You can also see Karin's other work on her Gallery KC.

All in all - a glorious day, and my dream of having a place where Lymies can find and give support, was very much true. The feedback was very positive, even if we didn't have as many people as in 2012. With the weather so nice, you can't blame people for wanting to go to the cottage!

DONATIONS  (updated May 23)
However, donations are still coming in. Please hit the "Contact" button at the top if you would like to make a donation, no matter where in the world you are. For ONLINE DONATIONS, go to CanadaHelps and choose one or more of the Lyme Links there. You can put in a note that it is for the Brampton Walk 2013 effort, but all goes to the charity.
THANK YOU !!

MORE PICTURES FROM SATURDAY

More pictures taken on Saturday in an online Album if you want to see:

CLICK

Niagara Falls for Lyme Awareness

May 17, 2013: Niagara Falls going green for Lyme Disease Awareness for the first time ever! Arrangements were made for people to arrive from all over to witness the event. We planned to meet at Table Rock around 8 pm. Some were inside, getting coffee and staying dry.

The tulips were gorgeous and just had to make it into a picture! No, it was not raining, for those who have not yet visited these falls - the spray is carried everywhere so always remember a jacket or something if you don't want to get wet!

Brought a T-shirt for the next day's Brampton Lyme Awareness Day for Jim Wilson, president of the Canadian Lyme Disease Foundation, and pinned it to his back. He let me -- brave man! 

 Nine o' clock and the lights turn green for the first time ever to highlight the Falls.

Green lights on the Falls for Lyme Awareness - what a wonderful sight! Pity it is needed, but so grateful for this vehicle to carry awareness.

Nina brought her beautiful dog -- and used the time to chat to everyone, meet people and to make connections. Her Lyme Disease had kept her housebound for most of the last two years. This disease just takes so much from so many people, even if it is not visible at first glance. 

Green lights on the American Falls against the darkening sky at 9:10 pm. The lights are housed on the left in this picture. 

Posters to tell the story about ticks, Lyme Disease, Canada Health and more. 

Old friends: Janie, Pam and I met more than a decade ago through an online chatroom, watching webcams in South Africa as wildlife went about their days. We have met several times in real life, and they came to show support at Niagara Falls. 

Setting up, trying to get a group shot of the 40+ people who attended the green Niagara Falls. 

Lisa Hilton in the USA captured a screen grab from the webcam over Niagara Falls. While we were there, I sent cell phone pictures to Facebook and people were commenting. Even from South Africa --- Pam was watching at 10 to four in the morning, with her little dog on her lap, in real time as history was made at Niagara Falls. What a wonderful experience to be a part of this event! 

Friends together with Arno behind the camera: Carolyn, Kim, Pam, Janie and Kevin.

Dr. Ernie Murakami poses for a picture with Christene (?), Marie and Debra.  

LymeSavers: Kevin, Cari and Bob

Jim with his T-shirt pinned to his back, and Kim chatting in front of the Falls. 

These are only a few of the pictures taken on Friday, May 17. Some 40 pictures are on an online album HERE if you want to see.

All in all, a magnificent evening! We only got home at midnight and then still had to slice up oranges to prepare for the Brampton Lyme Disease Awareness day the next morning. We only got to bed around 1:30 am and up again at 6:30 am. Busy captioning those pictures to share. It was a great day, glorious sunshine, and with good connections for Lymies, who need the support of the community to life with this disease. 

Watch this space ....