Posts Tagged ‘education’

4th Annual UBC NMO Patient Information Day

Written by on November 17th, 2015 –

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The UBC NMO Clinic and Research Program will be hosting a FREE public information day about NMO on November 28, 2015.  Meet us a the Djavad Mowafaghian Centre for Brain Health, Vancouver, BC.  The event is open to patients, family members, friends, caregivers, students/trainees or anyone interested in learning more about NMO. Lunch will be provided.  Please click here to register and for more information. Please share this with anyone you think may be interested in attending.

Note: Please register each person attending and their lunch preference.

If you have any questions or prefer to register by phone, please call Michelle at (604) 827-3111.

We hope you will join us!

WHEN: Saturday, 28 November 2015 from 10:00 AM to 4:00 PM (PST) 
WHERE: Djavad Mowafaghian Centre for Brain Health – 2215 Wesbrook Mall Vancouver, BC V6T 1Z3 CA 

 

UBC NMO Patient Day 2014

Written by on November 25th, 2014 –

nmo dayOn Saturday, November 1st, 2015, I attended the UBC NMO Patient Information Day. There were a number of topics covered, including Patient Experiences, Pediatric NMO, Sexual Health, Pain Symptom Management, Current & Future Disease Modification Therapies for NMO, an update on the NMO Walk/Run and an update from the MS Society.  As you can see, the day was jam packed!

The most exciting thing to come out of the day was that in Canada we are, as of THIS WEEK able to finally join the CIRCLES* Studies. The ability for NMO patients to give blood for the biorepository** has been in place for quite some time in the US, but because Canada has different rules and ethics around a study like this, Canadian NMO patients have had to wait while all the red tape was dealt with. Now, that wait is over- UBC has begun enrolling patients  in the study!

The other really important thing that was discussed was a petition that has been started, urging the provincial government to approve and fund Rituximab*** for NMO patients. Currently, Canadian NMO patients can get compassion coverage of about $3000 towards the cost of the drug, but the remaining balance must come from the patient or via third party insurance. The cost is prohibitive for most patients. In conversation with our local NMO clinic, arrangements are being made to have this petition available online and to extend the request to include that the federal government approve coverage Canada wide.

For those of you who are interested, I did manage to live tweet from the conference and you can review those tweets on Twitter, by searching the hashtag #UBCNMOday . I know there were several people from the NMO community following along and I was pleased to be able to help include them in the day’s events in this way.

The next NMO event coming up will be NMO Patient Day in Los Angeles on March 4th, hosted by the Guthy-Jackson Foundation. I am hoping to be able to go to learn more about what’s being done to help those of us living with this disease. If I am able to attend, I will of course report back and let you know what I learned!

 

*The Collaborative International Research in Clinical and Longitudinal Experience for Neuromyelitis Optica (NMO) Studies. This work is funded by the Guthy-Jackson Charitable Foundation for NMO research.

**Biorepositories are “libraries” where biospecimens (materials taken from the body, such as blood) are stored and made available for scientists to study for clinical or research purposes.

*** An immunosuppressive agent, given intravenously to prevent NMO attacks.

 

How Will They Know What I Need?: Disability Services in Post Secondary

Written by on September 11th, 2014 – 5 Comments

Being in post-secondary can be a very stressful time – so trying to figure out to manoeuver one’s MS diagnosis at the same time can make it even more difficult, especially if a flare-up hits at an inopportune time.

Luckily there are many services available to post-secondary students available at universities but at times it can be difficult to try to figure out where and how to get said services.

On September 20th, the Multiple Sclerosis Society is hosting an event titled “How will they know what I need? Accessing disability services post-secondary” at York University. Students with MS and their families are invited to participate as different services are talked about by staff.

I’ll also be speaking at it briefly about my experience in post-secondary with disability services and navigating the system.

I invite you all to this orientation and lunch. I’d love to see you all there.

Register for the event here: http://mssociety.ca/toronto/events.htm#postdisablility

Finding Humour In MS: Reflections On “Carry A Big Stick” by Tim Ferguson

Written by on March 4th, 2014 – 2 Comments

For anybody outside of Australia (including myself), you’ve probably never heard of Tim Ferguson. According to his website, “Tim Ferguson is a widely acclaimed comedian, writer and producer. He’s toured the world performing stand-up and musical comedy, co-writing dozens of live stage comedy shows and light entertainment programmes.”

Most famous for his involvement with the Australian comedy super-troupe, the Doug Anthony All Stars, that went on to experience superstardom in the sketch and musical comedy world. Be forewarned, the songs the Doug Anthony All Stars are famous for are not exactly appropriate for children or the lighthearted.

So why am I writing about this Australian comedy legend? Because recently I read his memoir “Carry A Big Stick – Laughter & MS” and it’s truly opened my eyes.

Truth be told, I didn’t understand half of it, because I’m not Australian so references to Australian geography, stars and pop culture was lost on me. Nonetheless, it was very cool to learn about his journey from a busker on the streets to fame.

However the most interesting part of his book, for me, is where he talks openly and frankly about living with multiple sclerosis.

Tim chronicles his journey from the beginnings where he started to experience symptoms such as numbness, loss of balance, chronic fatigue, etc that he chalked up to overworking himself. “I could barely stand straight. I couldn’t feel the hands I was shaking.”

He takes us through his diagnosis. “It was as if everything had slowed, as though I was watching someone else’s car crash.”

Ferguson walks us through his decision-making process to hide it from certain people, and to come out with to others. My favourite part is where he goes on a long explanation of what multiple sclerosis is complete with comparisons to “a bonkbuddy who gets emotional” and “a Swedish backpacker.”

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NMO Day 2013, Vancouver

Written by on November 19th, 2013 –

Thursday, October 17th, 2013 was NMO Patient Information Day here in Vancouver. I was invited to gave a presentation on the Health Mentors Program which went very well. There was alot of positive feedback.

My friend Nancy Reimer talked about being an advocate and organizing the first NMO 5 km walk/run (the first anywhere in the world!) this past May. She did a great job. When she talked about her 9 year old son’s battle with NMO, it brought me to tears. Little kids should not have to deal with life threatening illness!

Dr. Katja Van Hurle, from the Guthy-Jackson Foundation spoke about the work the foundation is doing. It’s easy to see from her energy and enthusiasm that she is such an asset to the foundation. Listening to what she had to say, it was impossible not to feel hopeful and encouraged about the progress the foundation is making. I hope to be able to attend GJF’s NMO Day in San Diego next year to connect with the larger NMO community in person.

The MS Society Lower Mainland Chapter also did a presentation on the support services they offer. Since the Guthy-Jackson Foundation is based in the US, the Canadian MS Society has kindly offered to take NMO patients under their wing and offer all their services to us as well. 

I got a nice surprise when they were showing their slides. There, up at the top left of each one was one of my photographs! This particular photograph has been used on the cover of the Peer Support information pamphlet and now as part of their slide show header! 

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NMO Information Day 2013

Written by on September 10th, 2013 –

Hello Everyone! I hope you’ve been enjoying your summer!

I wanted to share with you that the UBC NMO Clinic & Research Program will be hosting a FREE public information day about Neuromyelitis Optica on Thursday, Oct 17, 2013 from 9 am-2:30 pm. The event will be held at VIFF’s Vancity Theatre, which is located at 1181 Seymour St., Vancouver, BC. Lunch will be provided. If you’re interested in attending, please register here.

Last year’s event was the first time many local NMO patients had a chance to meet others living with this rare disease. It was also a valuable opportunity for those who had been or were in the process of being tested for NMO to gain important information. If you are in the Metro Vancouver area and have questions about NMO, I strongly encourage you to come. Attending last year armed me with enough information that I was able to advocate for a consult with an NMO specialist which ultimately led to finally getting a proper diagnoses. Knowledge is power!

I also wanted to share that I will be one of the guest speakers at this year’s NMO Information Day. I’ll be presenting about my experience with the UBC Interprofessional Health Mentors Program. If you attend, please be sure to come find me and say hello!

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