Category Archives for "WAMS news"

4th annual WAMS Fundraiser: Oct 3, 2014

The time has come! Tickets are now on sale for the 4th annual WAMS Fundraiser!

Follow the link below and get yours now! https://www.eventbrite.ca/e/wams-4th-annual-fundraiser-tickets-12781031409

Hosted by the Fabulous Joan-E!!! With very special guests:

• Conni Smudge
• Vera Way
• Peach Cobblah
• Eva LeGore
• Isolde N. Baron
• Sharri Muttart
• Chris Lam
• Carmen deFoy

Show starts at 8:30pm

Doors at 7pm

Last call 12:30am

Sponsored by: Petite Pearl Events and Open Road Auto Body

Introducing Danielle, one of our Recipients for our Second Annual Fundraiser!

Hello my name is Danielle, and I am 32 years old. In 2008 I officially received
the news that I did in fact have multiple sclerosis. This was news I had been trying to avoid for a couple of years already, and hearing the confirmation was devastating. Regardless of how far or how fast I ran, this mad monster of a disease had managed to catch up to me.

Prior to my diagnosis I had been in the process of building my future and career in Real Estate Sales while living in the Okanagan Valley. Despite the work that I put into my life, it turned out that my body had other plans for me. The harder I worked in my career, the harder the stress of my job worked against me and my body. Slowly I began noticing different deficits in myself and my abilities. Suspiciously I wrote the occurrences off as coincidences caused by other events in my life. In 2006, on the advice and insistence of my doctors I walked away from the life I had been working hard to build and so dearly loved despite the effects it was having on my overall well being. I was told that if I wanted to be able to walk in the future I needed to pay attention to my health, despite that attention bringing up difficult decisions at that current moment; it would help me out in the long run. Weighing my options at that time that is what I took the advice and literally ran with it; choosing to leave without looking back. I gave little to no reason for my departure to those in my life at the time because I knew that if I had to explain why I was doing what I was doing I would not of maintained the ability to hold onto my choice to leave everything behind.

Daily I battle with the constant reminders of my condition. The extreme fatigue, severe mobility issues, and pain; with my pain averaging 10.5 out of 10.Most often my body feels as though it is wrapped in a nylon body suit that is too tight for me; having these difficulties in my life is very frustrating. I have managed to deal with them, and mask them to the best of my ability. Both to myself and everyone around me. This monster really does teach you the game of self preservation! Having said all this by no means have I allowed any of this get in my way and stop me from creating new goals in my life and moving forward. Despite the barriers living with MS has put in my way I explored new ideas and passions and began pursuing further education. I have also had the wonderful support from friends, both new and old who helped strengthen me to better accept my condition and the reality of it.

I am now in my 3^rd year of my Bachelor of Social Work Degree. I love this new path and am excited by the fact that at the end I will be able to positively affect the lives of individuals in our community. This path has also put me in touch with myself and allowed me to open up when thinking of living with MS. It has also opened me up to connecting with new networks of people within the MS community.

I’ve had the honor to find out about the WAMS Foundation just this past year when they offered their support and assistance to my girlfriend Michele. Michele, who was the 1^st recipient of the WAMS Foundation, suffered a major relapse at that time which truly frightened me with the reality of this disease. Seeing her going from being fit for a wheel chair to dancing in heels at her wedding three months later after receiving treatment with the support of WAMS removed the doubts I had when I first heard about the CCSVI Treatment. It also made me start to consider seeking the treatment. If I could get any relief from some of my symptoms. I would consider the treatment a success.

After much internal debate about asking for help I finally contacted the WAMS Foundation earlier this year. I was humbled and relieved to hear that they were willing to assist me in my CCSVI journey. As I am currently a full-time student on student loans the ability to pursue this costly treatment on my own would be many years away. As we know when you are dealing and struggling with MS time is of the essence and everyday matters when working towards maintaining abilities and mobility.

I thank you all for taking the time to learn about me and any support you may be able to offer. I also thank the WAMS Foundation for reaching out to help me through this part of my journey.

Sincerely,

Danielle

Introducing Morgan, one of our Recipients for our Second Annual Fundraiser!

Hello I am Morgan, the next recipient for the upcoming WAMS Foundation Fundraiser. I am thirty years old, and am a wife, mother, daughter, niece, cousin and friend. I was diagnosed with Multiple Sclerosis 9 years ago and have found that living with this disease significantly affects my way of life. It prevents me from doing the things that I love chasing after my toddler son, snowshoeing,  crafting, dancing and traveling.

Living with MS fluctuates, and the symptoms can go from barely there to being a complete nuisance and barrier in my life  One of the hardest symptoms for me is the extreme fatigue; I’m not just sleepy but exhausted barley able to think.. It feels like my body doesn’t listen to my directions. Having once been a dancer I had good co-ordination, which is no longer the case. I send out directions to my body and the messages are received slowly if at all. I also feel like I am almost always in some level of pain. On a scale of 1-10 I live in the 3 range most days though recently I’ve had lots of 8 or 9 days. I also experience restless legs; it’s this crazy almost tickle response that causes my legs to jolt and jump for no reason. I often drag one leg when I walk or use a cane for support and balance. Oh and numbness; I almost forgot numbness, it’s like going to the dentist but instead of freezing your mouth he randomly chooses a body part much like a really bad case of pins and needles. I also don’t feel as smart as I once was. It’s as though my mind doesn’t work the way it once did, often feeling that my memory is muddy and my words come out garbled. I say one thing but mean another and I often lose my train of thought mid-sentence.  There are other symptoms that come along with living with MS they have become mostly background noise that I have learned to tune out.

My MS hasn’t been all bad though. I’ve learnt a great deal about myself since being diagnosed with MS. It has brought me too many realizations that I’m not sure I would have reached otherwise. It’s pushed me to new levels of spiritual growth and has taught me compassion; both for myself and others. MS has taught me to take time to enjoy the little things in life; walking slowly provides lots of opportunities to smell the flowers. MS has taught me to deal with issues as they arise, as procrastination only causes more pain in the long run. I have learned to treat my body with kindness and respect; exercise, stretching, relaxation and proper nutrition have really improved my quality of life.

Finding WAMS has been a huge blessing not only because being a recipient has given me hope but I have also found a great deal of support from the people who run the foundation. Thank you so much for supporting WAMS and for supporting me- it means so much to me and my family.

Sincerely,

Morgan

www.devinandmorgan.com

2011 in Review

2011 was an amazing year for the WAMS Foundation, but also for me personally. In March, I travelled to San Diego with a group of very supportive family and friends (including WAMS co-founders, Melanie Pump and Jennie deFoy) to receive the CCSVI treatment. The treatment was successful. The Cognitive Fog that I had lived under for 2 years was lifted and my sight which had never returned to normal after my MS-induced bout with Optic Neuritis returned to normal. I could see red again!

One of the other supporters on this trip was Brian Nykon of Captured Films, a documentary film-maker. Based on footage from my experience before and after the treatment he has begun a documentary on MS & CCSVI. The documentary is in the beginning stage, but we’re very excited about his progress and the future of the project.

Prior to obtaining the

CCSVI Treatment, I had worked hard to support and assist MS patients, primarily through fundraising for the MS Society. However, I now wanted to help more directly, which is how the WAMS Foundation was born. One of the first steps in the building of the Foundation was reaching the public, which today requires a website. For that, we thank Lewis Communications, who graciously offered their time and advice. They continue to help us today. For getting the word out, I want to thank Kumiko Umeno for inviting us to her client appreciation evening and introducing us to her community and particularly, a big, big thank-you to Michele Mateus, our first recipient, who has played a huge part in our communications team. Michele is a social media genius and without her Twitter and Facebook skills, we wouldn’t be as known as we are today.

The first WAMS Fundraiser was held on May 13, 2011 and was kindly sponsored by Richmond Autobody. Additionally, I was overwhelmed by the incredible resources and support that were brought to us: the room looked fantastic thanks to the materials provided by Sweet Beginnings, the lighting – (who knew this was such a huge endeavor?!) –  was all taken care of by Kitty Hoffman. We also had many, many generous donors contribute silent auction items which helped bring this event to a resounding success raising nearly $18,000. Some of these funds were used to set up the Foundation as a formal not-for-profit, but the majority of the funds went to supporting Michele to have the CCSVI Treatment.

Michele’s symptoms were much more pronounced than mine had been. When we met her she was off work after suffering a major MS relapse that had left her unable to walk. You should see Michele today! She is now walking and living a full life. You can read more about Michele in our past blogs.

The success continued with our first corporate sponsorship brought to us by the Commercial Division of REALTORS® of the Real Estate Board of Greater Vancouver. They helped up raise further funds which combined with the existing reserves allowed us to support two more MS patients to receive financial assistance. Jena and Jane. Both women elected to undergo the CCSVI treatment and have had successful results. You can read Jayne’s blog post about her treatment on our website.

It goes without saying that we are very grateful to these generous sponsors and definitely encourage you to contact them should you require any of their services – please click here or visit the “Sponsor” tab for their contact information. We’d also like to thank all of our wonderful volunteers who have dedicated time to our cause. We are honoured by your dedication and are so very appreciative.

My own treatment was the start of an amazing year, but helping Michele, Jena and Jayne were really the highlights. I look forward to helping more MS patients in the upcoming year.

-Carmen

A Group Hug for Success! Jennie deFoy, Myself, Michele Mateus and Melanie Pump at our first fundraiser

WAMS Holiday Fundraiser

One of our lovely sponsors, Kumiko Umeno, is sponsoring a WAMS Christmas event, and it’s one that will be fun for the whole family. We are screening Home Alone on December 11^th, 2011 at 1:30pm. $12 provides you with admission to the movie at the Rio theatre, a popcorn and drink, as well as a tour of the projection room for the kids. Check out the attached flyer for further details. Continue reading

New Discoveries, New Beginnings

The past couple of months have been very busy for WAMS, hence the lack of blog post from me. However, we recently had a wonderful experience that I want to share.

WAMS was invited to attend a conference organized by the National CCSVI Society http://www.nationalccsvisociety.org/ and very appropriately called  ”New Discoveries, New Beginnings.” The intention of the conference was to provide a platform for leading Canadian researchers and physicians to present medical research and patient education on how CCSVI is emerging as a new vascular disorder linked to many poorly understood diseases, such as MS. Second and equally as important, it was a networking event for all those working in the CCSVI community.

The first part of the conference was a roundtable event for groups active in the CCSVI Community. I attended the event with our first recipient, Michele Mateus. We were surrounded by people, like ourselves, who have been committing hours and working hard to support MS patients and/or advocate the benefits of CCSVI. Other attendees included, Siobhan MacQueen from CCSVI Alberta, Sandra Birrell from the National CCSVI Society and Debra Golden from CCSVI Grand Prarie (Just to name a few). It was very inspiring to hear the efforts made and the successes these groups have had. Through the discussion, we realized we would be more effective if we worked together and consistently shared information. To facilitate this, we formed a collective, which will regularly meet via conference calls and through social networks.

Also, at the roundtable event, we were fortunate to make a special connection with Linda Molyneux from the CCSVI Coalition. Her group focuses on achieving the recognition of CCSVI as a treatable medical condition, not solely as it relates to MS. WAMS has since become a Partner in this coalition as we support their goals. Linda has already shown that mutual support by meeting our next recipient, Jayne Thomas, as we were unable to travel to Ontario to meet her ourselves. After their meeting, we committed to helping Jayne fund her CCSVI treatment (to be discussed in the next blog post. Promise! J) We wholeheartedly thank Linda for her devotion to the cause and for her support.

We made another great connection at the conference with the honourable Dr. Kirsty Duncan<http://kirstyduncan.liberal.ca . She is the Liberal MP for Etobicoke North and she’s been courageously advocating for MS patients at the Parliament in Ottawa.  Yet another inspiring person working tirelessly for our cause. If schedules allow we’re hoping for Kirsty to attend our next event, so all our supporters will have the pleasure of meeting her and hearing about the bill she has recently tabled in parliament to establish a National Strategy for Chronic Cerebrospinal Venous Insufficiency. http://kirstyduncan.liberal.ca/release/dr-kirsty-duncan-tables-bill-to-establish-a-national-strategy-for-chronic-cerebrospinal-venous-insufficiency-ccsvi/

All in all the conference was a success and we left feeling part of the community that is working to improve the life of MS patients. Our sincere thanks to the National CCSVI Society http://www.nationalccsvisociety.org/ for organizing the event.

Thank you for taking the time to read my blog and for supporting our foundation. As always, please feel free to contact the Foundation should you have any questions, we continue to be here for you guys and will always help in any way we can.

As I mentioned, Michele Mateus also attended the CCSVI conference and she’ll be sharing her experiences in the blog as well. Thanks to Michele for again taking the time to share her experiences with our supporters!

New Connections

September 10th was the three month anniversary of my CCSVI treatment, and what better way to celebrate then to head over to Sidney on Vancouver Island to attend a conference put on by the National CCSVI Society: New Discoveries New Beginnings. The purpose of this event was to bring together people from across Canada and deliver the latest in CCSVI research.

Prior to the start of the main conference, various groups from across Canada that have been working on CCSVI related issues (fundraising, activism, research, awareness raising etc.) came together to meet for a roundtable discussion to share what we have been working on and collaborate on how we might be able to work together. Walk a Myelin Our Shoes foundation CEO Carmen Amundsen and I were both invited to the meeting to represent WAMS, which we did with great pride. My friend Michelle Walsh, who I have previously only spoken to via the internet, was also at the roundtable discussion. Finally getting to meet her was an emotional moment, and I felt like the conference was off to an amazing start!

While each group at the meeting varied widely in terms of the work they do, all of us share the common goal of  improving the lives of people living with MS, and supporting the CCSVI movement here in Canada. The meeting ended with the decision to form a collective; working together wherever possible, and providing each other with mutual support as we endeavor to help people in the MS community. I see wonderful things coming out of this new collective, and I am excited to be part of a group of Canadians who will be making a difference for the rest of our peers. It is wonderful to not only be part of this new team but also know that I have made new friendships within the group across the country; great for when you want to travel and have people to visit along the way! Red Wine in Alberta, a visit to a farm on day in Saskatchewan and shopping in Toronto awaits : )

Sandra Birrell, President of the National CCSVI Society, and her team did such a wonderful job and I commend them for their hard work, as I know how hard it is to put on large scale events and organize speakers, food, rent space etc. I’d like to give a standing ovation to everyone at the NCS!

The highlight to my day was meeting Dr. Kirsty Duncan.  I have long since admired her from afar, watching all of her speeches about CCSVI, reading about her efforts and cheering her on from the sidelines. When I introduced myself I was not prepared for how emotional the moment would be, I definitely shed a few tears as I said thank you to her for all the support she has given to those with MS. She asked me my name and my story, and as I told her she too began to cry, and hugged me with such warmth. She asked about how my strength had improved since the surgery, and she got even more excited when I showed her how I am now able to walk. She grabbed my hand and started to tell people that they needed to hear my story; that six months ago I went from being fitted for a wheelchair, to walking down the aisle in July! It made me blush to see someone who I look up to get so excited by me and my story.I guess as I have been living it I don’t get as excited by it as it has been more of a struggle then an excitement. It is true that more people should hear these positive stories, which is why I blog here. I made sure to introduce WAMS founder Carmen Amundsen and Member of the Board Jennie Defoy to Kirsty Duncan as well, as I had to introduce Kirsty to the wonderful WAMS Foundation team who helped me!

I ended up being interviewed for a documentary that was being made that night, thanks to Kirsty asking them to add me in. I’m not sure if I’ll make it into the documentary, but it will be a really big honor if I do. What was really touching was that at the end of her speech that night, Kirsty Duncan  mentioned me by saying she will always remember a girl she met  who was fitted for a wheelchair six months ago and in July walked down the aisle thanks to her CCSVI treatment. Our entire table was crying, and I was so flattered to know that she was speaking of me.

I hope you get to read this blog post Kirsty, as I would like to say thank you again for taking the time that day to talk with me, for getting excited about my story, and for sharing it with others during your speech. It meant so much to me, you are a true inspiration and I am so grateful for having met you!

Dr. Arata and Dr. Hewitt, the two doctors from Synergy Health Concepts where I had my CCSVI treatment, one of which did actual treatment (Dr. Arata) and the other was the one who did my intake and post treatment visit (Dr. Hewitt) were also there. Dr. Arata seemed quite moved by the fact that I managed to get well enough to walk down the aisle at our wedding, without assistance, as he remembers how progressed my MS was when I came into treatment. Oh and I won the Dr. Bill Code’s books in the silent auction that I have been wanting for a while so that is the next up on my to do list is read them! I got to meet him the next day, and have him sign them for me, yes I am a nerd like that : )

I am happy that I went to this conference. I left feeling full of energy, ready to get even more active in the MS community and in the CCSVI movement. Not to mention it was a beautiful weekend and the ferry ride both there and back was lovely, and we had the chance to enjoy fresh Island air that I often miss, being an Island girl myself.

I encourage everyone to try and get out to any type of conference, workshop, gathering, rally etc. related to CCSVI if you can. It’s a great way to learn about MS and meet other members of the MS community. Even if you have not had the CCSVI treatment, or if it is not something that you are considering at this time, I would still recommend you go and check these opportunities out.
The things you learn, and the connections you make, will never fail to surprise you.
Happy Fall everyone!