The first project on the go is a Canadian Recipe book that is a compilation of favorite recipes from Lymies and their families across the nation.  There are a multitude of different sections that we need to fill with your family favorite recipes, such as Appetizers, Casseroles, Stews and Chilis, Breads etc.

The book will also contain sections that will give some information about Lyme disease and what to watch for as far as a short-list of immediate symptoms and checking for ticks.

Each recipe that is submitted by a Lymie will have their first name and the province they are from, as well as the province/state of where they were bitten, if known.

The book will be coil bound and attractively finished to become a great addition to any cook’s kitchen essentials!

If you have any recipe’s you would like to submit, please email them to Melanie at mlauren@murakamicentreforlyme.org

I look forward to working with you all on this project!

The second project is a Lyme Journal that we’ve put together for Lyme sufferers. For a minimum donation of $20 you will receive a 8.5″ X 11″ coil bound journal with 150 pages to track and record your struggles and journey with Lyme. These can then be submitted to Dr. Murakami to extrapolate further information and statistics from for research, and then will be returned back to you.

It’s a great way to document the struggle and help with research all at the same time!

If you are interested in helping with this project, please visit the society website at http://www.murakamicentreforlyme.org to make your $20 donation through PayPal from the link on the homepage. (you do not have to have a PayPal account to use your CC to pay.. simply indicate when you click on ‘donate now’ through PayPal that you don’t have an account and you will be given an option to continue.)

Your journal will be mailed to you within a week of receiving your payment. Please be sure to indicate in the comments section of the donation that it is for the Journal. This will not qualify for a tax receipt.

Melanie

But its most disturbing when the negativity comes from within the community.

There have been numerous people questioning Why Dr. Murakami started his own Society. I think the time is ripe for some facts to be laid to rest.

It is a fairly well-known fact that Dr. Murakami was involved for some time with the Canadian Lyme Disease Foundation (CanLyme) out of Westbank, BC. Although he was a Board Member, his position was ultimately limited to that of Medical Advisor.

Throughout his tenure with CanLyme, Dr. Murakami funded most of his expenses to attend lectures across the Nation out of his own pocket on CanLyme’s behalf. After retirement, this expense became increasingly more of an issue. Discussions with CanLyme regarding funding for Dr. Murakami’s research as well as his expenses were to bring about the fact that CanLyme could not and would not be willing to fund Dr. Murakami.

It has also been the goal of Dr. Murakami to continue to help those stricken with Lyme and co-infections across Canada, regardless of the harassment and defamation of character he has endured for his treatment of Lyme. His forced retirement left him in a predicament where although he desperately wanted to continue to serve the Lyme community, it was becoming an expense he could no longer shoulder on his own.

The situation became a choice of either retiring from Lyme altogether or starting his own Society in which he could channel his efforts wholeheartedly and gain donations and funding for this. This soon became his reality and the formation of the Dr. E. Murakami Centre for Lyme Research, Education & Assistance Society was borne.

Dr. Murakami remained a Board Member with CanLyme up until just recently when he resigned his position to focus on his own directions and goals.. to continue to Educate and raise awareness for Lyme across our Nation and within our governing bodies.

CanLyme currently has a vision of building a research and treatment facility for Lyme. Although the idea is grand, the reality of it is that there are no doctors willing to treat Lyme unless some pretty drastic changes come about within our Health Care System first. We view this directive as putting the proverbial ‘cart before the horse’. Education MUST come first if we are to succeed in changing the existing policies and protocols surrounding Lyme. Only after success in this will doctors no longer be afraid to treat Lyme. They will know what this disease is all about and will be able to freely act as doctors should towards anyone facing the effects of this disease. A Research Facility would be wonderful if this were to finally happen. Why should millions of dollars get placed into a building that can’t house medical practitioners that can help Lyme victims? Did you know that such a building currently exists in Manitoba? It was built specifically for Lyme Research and Treatment, and because there exists a lack of proper surveillance, poor testing methods, doctors who are not educated on Lyme, etc, etc.. the program was abandoned and the building currently sits unused, for the most part, and forgotten. Outside of that fact, there is in existance thousands of empty buildings that could easily be leased, saving tens of thousands of dollars in permits, construction and legal issues surrounding the building of a medical facility.

The goals of the Murakami Centre for Lyme is primarily Educating both professionals and the general public about Lyme, developing educational programs for schools and youth groups, Research (extrapolating valuable data from over 3000 patient files) and assisting those with Lyme by way of communications with physicians, discussions of possible Lyme infections, raising awareness, and effectuating changes in existing protocols. Our funding is self-driven by way of fundraising events and donations from the public.

Having said all this, the unfortunate resonating effect of Dr. Murakami’s ‘split’ from CanLyme has had some negative connotations. Rumor mills have sprung up with ill regard to the situation. It truly is a sad state that there has to be negativity surrounding this issue, when all parties should be focused on the common goal; making Lyme a commonly accepted word within our Medical community, and changing policies and protocol surrounding the way this disease is viewed and handled. Its really quite simple.

Dr. Murakami is truly apologetic if any of the public or any of the CanLyme crew views his split from CanLyme as a negativity. He continues wholeheartedly to service the Lyme community to the best of his ability and allowances. He has made it his remaining life’s work to continue to fight for changes and to assist those with Lyme. He has no ill feelings towards CanLyme and their objectives and has never spoken an ill word about CanLyme or their Directors. He is simply not that type of person. Anyone who knows Dr. Murakami will know this as the purest of truths.

He is not a man of conflict and confrontation. He is doing what he loves and that is simply, helping others. It’s sad that some view this as a threat.

As a Society, it is our mandate to continue to offer hope and effectuate necessary changes for Lyme victims. We hope you will join us in our fight. Many Lyme groups across the Nation have the same goal in mind and together we  can make a difference if we work together.

Events for the day include:

10:00 AM Showing of the Lyme Documentary, “Under Our Skin”

12:00 PM Catered Luncheon by McCann Caterers/ Live acoustical entertainment by Lyme victim and songwriter, Lazar Kostic

1:00 PM Lyme presentation by Dr. Murakami followed by a Q & A session.

There will also be Silent Auction items on display to bid on for fundraising, Lyme Awareness pendants and T-shirts for sale and brochures with information.

We have also arranged for Access into the gardens should you desire to take a leisurely stroll at any time.

If you haven’t already done so, you will need to RSVP to this event as we need numbers for the catering. Please do so by emailing Melanie at mlauren@murakamicentreforlyme.org

Various provinces have each held their own Wall of Hope again this year, being the third consecutive year of such rallies across the nation.

Many are wondering how the Wall of Hope came to be and the story behind it. We’re lucky to have the founder on our team, as a mother to a Lyme fighter.

Here is her story as to how it came about…

The Story Behind the Wall of Hope by Sherry Drew, mother of Josh, a Lyme fighter

How the idea began was a conversation between Josh and Mary. I was on the phone with Mary. Josh was very, very sick, but had made a dramatic improvement on treatment. This was shortly after Josh was diagnosed with Lyme by Dr. Murakami.
 
Mary phoned to find out how Josh was making out on treatment and to offer support. Mary and I were discussing how things could have gotten so out of hand with Josh’s health, before anyone clued to the idea it might have been an infection. We were talking about how many hospitalizations he had had and how he had seen so many doctors.

Mary said something to the effect that ‘something needs to be done as we are all alone in this battle and people keep throwing rocks at us.’ I told Josh what she said and he said ‘We need a wall.’ Mary and I did not know what he meant. He said ‘you know, like in a fortress. If you and I stand together, shoulder to shoulder then sometimes I will take a rock and other times you would take a rock. We could share the hits. A wall.’
 
As this thought sank in we agreed that this is what needs to happen. We need to stand shoulder to shoulder so that we can share the burden. We can share the pain and the onslaught of this battle we are all in together.
 
We pictured this event taking place on November 12…in Hope. A Wall in Hope…many people standing together, in Hope, the day after the liberation date of the war. Anyone who could not make it would have a picture held up, shoulder to shoulder…
 
Mary and I decided at that time to make this happen. The timing was not right as November 12 was too soon…since we had then extended the date we decided to fundraise to assist getting everyone together…but then thought…if we are going to put in this much effort then the event should be in Ottawa, where our troubles could end.
 
That is the Wall of Hope. It is not a militant wall…it is not a political statement…It is people, standing shoulder to shoulder, to share the burden of this illness and to remember those who did not have anyone to share the pain. We all have the exact same story. The only difference between stories is each is personal…it happened to us…other than that we could put one story on top of the next and with the exception of small jigs and jags they are carbon copies of each other.
 
The Wall is for people…sick people…and their families. It is not for activism or making a statement other than ‘Help Us. Stand with us. We need you to join us so we can share the pain and the abuse.’

 Please remember this when having your own Wall of Hope. It is for Lyme victims, even those who do not know they have Lyme yet and especially for those who could not come and those who have not won the fight.

 Stand shoulder to shoulder and show your pain. It is ok to have Lyme this day. Please remember the minute of silence for those who have died. They show us why we need to continue and what we are focusing on. We need help. We need people to care. We need people to join us before they get sick so they can prevent having their own carbon-copied story of this Lyme disaster.

Sherry, Josh and Mary

Our own Wall of Hope will be held in Squamish, BC this year on October 3.. Typically the Wall is held on the same day across the nation, but it is an astronomical feat to try to maintain and arrange that annually, given that everyone’s schedules are so varied.

With the Wall of Hope going full bore across the Nation, seminars, presentations and fundraising raffles, it’s hard to keep up with where we’re supposed to be!

Here is what’s slated for activities for the upcoming months:

September:

8th- Seventh Day Adventist Church having an open house presentation with Dr. Murakami regarding Lyme in Canada. 7:00 PM in Aldergrove location. See website for full details at: http://www.murakamicentreforlyme.org

17th-Victoria’s Lyme Awareness Support Group Wall of Hope III, being held at the Victoria Legistlature Building, front steps. Starts 10:00 AM. For full details, visit

12-13th- Landsdowne Mall in Richmond, BC.. booth space handing out Lyme information and selling raffle tickets for the Christmas Pedal Car raffle. The car will be with us on display as well.

27th – Lyme Presentation and Luncheon at VanDusen Botanical Gardens. This event is free to attend, but please RSVP to Melanie at mlauren@murakamicentreforlyme.org

October:

3rd- Wall of Hope III held in Squamish BC, hosted by the Murakami Centre for Lyme. Day long events featuring showing of Under Our Skin, live entertainment, raffle ticket and fundraising items for sale, Lyme presentation by Dr. Murakami and awards presentations. Full details available at http://www.murakamicentreforlyme.org

We’ll be sure to list more as it comes… I’m sure I’m forgetting something too…

We’ve designed a new awareness pendant.. It features a green glass (handmade) awareness ribbon and a metal leaf combined into a funky adjustable neckpiece. Strung artfully on a black waxed cotton string with slide knots for adjustment. All net proceeds fund the Murakami Centre for Lyme!

Click on the photo to go to the Murakami Centre for Lyme Shop to order yours!

I apologize for the seemingly unorganized manner this has gone… the interest in just a social lunch seems to be lost as more and more people want to learn about Lyme!

Okay, so here’s the deal.

1. There is NO CHARGE to attend this event. You MUST RSVP however, so we can have enough food for everyone. Donations at the door are gratefully accepted. Children are welcomed, but keep in mind the Lyme info might be a bit much for them.. plan accordingly.

2. Doors now open at 9:30 AM with a 10:00AM showing of Under Our Skin (1.5 hours).

3. A lovely catered lunch featuring western and asian cuisine will be available, buffet style from McCann’s Caterers from 12:00-1:00PM

4. Dr. Murakami will then do a Lyme Presentation and Q & A period from 1:00-4:00PM.

5. Silent Auction as well as a  Murakami Family history photo montage will be on display.

We truly hope this will be a successful event that further covers the interests of those wishing to attend.

We thank you for your patience as we work on making this an worthwhile event for everyone to enjoy!

Please RSVP to Melanie at mlauren@murakamicentreforlyme.org

Melanie

He was invited, graciously, by the Seventh Day Adventist Church group from Hope, BC., to be one of their presenters over the week-long camp, for Lyme disease. Their group hosts an annual get-together at Camp Hope in which over 2000 people are in attendance over the week to meet and discuss various issues they have interest in.

Despite the extreme heat ( in which he was to lecture outdoors in a stuffy tent !) , his lecture drew in over 100 people his first evening. The group awarded him with a special plaque as this was record-numbers of attendees for any lecture of their week-long camp! Yay for him!

The week progressed with still fairly high numbers of attendees to his lectures. He changed it up a bit for them as he went from day to day. He saw lots of doctors in attendance from all over the nation and up from the US. There was tremendous interest in everything he had to say to them about Lyme.. the symptoms of such, the issues surrounding the politics of Lyme, the need for education, better testing, and government cooperation.

He convinced a few more doctors who approached him afterwards with a slew (sp?) of questions for him. Overall, he felt it was a very successful lecture to be involved in. The best part is that the group decided that they want to support Dr. Murakami’s efforts and were wanting him to come back again next summer to be a part of the group for 2010.

My job now is to do follow-up with these groups and forward them as much literature as I can muster, inundating them with information they can perhaps pass out to those who were in attendance, and who are maybe inquiring further about more info about Dr. M and his efforts.

Here’s to team-building success!

Thanks to the Seventh Day Adventist Group in Hope and their members in attendance from all over the globe. It was a pleasure being asked to participate and an honor to be asked to come back again next year!

During this whole project, which is now stretching into the second week, I’ve been thinking about the Society, all the stuff I still need to find time to do, and couldn’t help but contemplate the similarities between stripping away layers of old ways of doing things, and replacing it with the new. Kinda like the old dinosaurs in positions of power that need to be replaced with more up-to-date forward thinkers within the governing bodies of our country. I get overwhelmed sometimes with the amount of negativity surrounding Lyme and I sometimes feel like its a bigger fight than I can muster. Funny enough, as Paul and I were working side by side, complaining about how hard pulling the nails from the ship-lapped boards was on our 40-something bodies, he suddenly says “This is like a major cleansing of the soul; stripping away all these layers of rotten tiles”..

And I suddenly thought, ‘ you know, that’s exactly what it is..” (in dealing with Lyme and close-minded people). I know that our efforts are not fruitless and that eventually, once all the hard work is done, things will be so much better and the results of our efforts will be visible to all…

Kinda like our roof

or is it….

~ I think the heat has gotten to me… ~

Sherry is a very funny lady as well, even when she’s experienced enough suffering within her family with Lyme and possible Lyme infections, she still always has her quick wit about her and her ability to make you smile.

She’s proven herself to be very eager to help out the Murakami society whenever she can and in whatever capacity she can assist in. Her knowledge and experiences and her compassion for people make her a huge asset to the team.

Welcome aboard, Sherry! We look forward to huge successes this year with our board of members for 2009!

(and we promise you won’t find any stray cows lurking around our blog…) ~ a little inside joke there….~