NMO Advocate Nancy Reimer (the first NMO Dedicated Walk/Run)

We were extremely inspired by Nancy Reimer and her ability to put on the very first NMO Walk/Run with all proceeds going to NMO research. Read her interview here and find out what it really took to be a NMO Advocate trailblazer:

Tell us your relationship with NMO. I understand your son has the disease?

Yes, Riley, who is now 9 years old, has NMO. NMO entered our world on July 31, 2011, he was only 7 at the time. There was no warning, no time to prepare…we woke up that day to a completely different world. Riley was first diagnosed with Acute Disseminated Encephalomyelitis (ADEM) which was said to be a one time brutal attack on the central nervous system and Drs were hopeful that he would make a full recovery. The diagnosis changed to Neuromyelitis Optica (NMO) around his fourth attack (he had 6 attacks one month apart). I have seen my son completely paralyzed from the chest down, I have seen him in a coma like state, I have heard him scream in agonizing pain for over 4 hours at a time. Terrifying times as a Mom to see and to hear, but I have also had the amazing gift of watching him fight his way back to the incredible boy he is today. We are blessed that the damage from these brutal attacks is minimal in comparison to what we know it could have been. Riley is an amazing child.

Being the first in anything can be a scary thing. Many NMO patients and their support networks are doing MS events. Why did you decide to host the first NMO focused event instead of doing a MS event?

This time last year I ran a Half Marathon. I had run that distance before, but it had been awhile. After what I had been through the previous year, I felt I needed to do something to help raise awareness for this thing called NMO. Just prior to this Half Marathon, I purchased my first NoMOre shirt and I proudly pulled it over my head that day. It was symbolic to me…I was doing something…I was moving forward. As I started to run, I remember the amazing feeling of joy that came over me. Not only was I doing something that I loved, I was wearing a shirt that would come to mean everything to me. At about 13km, a song came on my ipod…it was one of those songs that evoke very strong feelings. I was not prepared to have the breakdown I did at 13km, but I allowed myself the grace to feel what I was feeling. After a few minutes, I picked myself up, restarted that song, and allowed it to drive my feet and push me towards letting it all go. I remember many things about that run that day, but I guess one of the most important things was the first thought for what would happen on May 26, 2013. I ran that Half Marathon last year alone and I thought at one point “Wouldn’t it be cool if one day there were tons of green shirts…like a sea of green…running together to raise awareness for this rare disease, NMO”. Little did I know at the time that it would be me that would make it happen. As a runner, I used what I had at my disposal to get started. I approached my friend who owns a running store with the idea of a 5km walk/run specific to NMO. He immediately jumped on board with the idea and we picked the date for the event that day. I don’t think it ever occurred to me at that time that this would be the first of its kind. Many times in the planning, I thought “What on earth have I done,” but I just kept moving forward with the planning and used every contact that I had in my life to make it happen. That is how it came to be. It was not ever my intent to pull away and separate from MS…I have precious friends who have MS and I join in that fight too. I guess for me, as Riley’s Mom, I felt I needed to do something big that would help his diagnosis. I needed to know that the money raised would go to NMO Research. Because of its rare disease status, there is not a lot of money available for research…I wanted to be a part of changing that.

We have had the privilege of participating as Team NMO in two MS Walks. Our first experience was tough, because we were new to NMO and Riley was actually in the hospital while our team of 5 walked in the event. This year at the beginning of May, we drove four hours to join Team NoMOre in Penticton, BC. This was a Team of approximately 120 people that had banded together for an amazing woman who has NMO. What an incredible day it was. We were so blessed to have been involved in it and to meet so many fantastic people. It was a life changing and very pivotal weekend for me in particular. I watched as two people with a shared diagnosis met for the first time. Neither one had met another person with NMO before. She, a woman of 38 and he, an almost 9 year old boy. The connection was instant and powerful and I will cherish that visual forever.

Tell us about the event (# of people, logistics, etc.).

The event took place on a rather overcast day at beautiful Rocky Point Park in Port Moody, British Columbia, Canada. This park is gorgeous and is right on the water. It is a place that is close to my house so I run there often. It was the perfect place for this event. May 26, 2013 was history in the making and I am so proud of how it all came together. I will never forget how it felt to take the stage and address the “sea of green”. It was a blessing to actually “see” the support with my own eyes. Our final registration was right around 370, which included about 35 absolutely incredible Volunteers. Our event started with opening ceremonies. I spoke, two others with NMO spoke and then we heard from our wonderful NMO Dr. who works out of UBC. There were 9 NMO Families represented at our event and so it seemed fitting that the two youngest diagnosed with NMO officially open the race course by cutting a green ribbon. It was a phenomenal event. Never in my wildest dreams did I ever think it would turn out the way it did. The support was priceless and we were able to raise approximately $24,000 for the cause.

What advertising did you do to promote your event?

I used a lot of social media…facebook mostly, but my posts were repeatedly shared and some tweeted as well. I contacted a few of our community papers and we were on the calendar in one and the other printed our story a week prior to the event. UBC advertised through the Canada wide database, VGH and UBC Hospital Foundation added a page about NMO and advertised the event, Guthy- Jackson Foundation advertised on Facebook several times. We had posters in the Community and in all of the Drs offices and hospitals where Riley is being or has been treated. A lot of the registration was family and friends of people with NMO that had been waiting to be a part of something on behalf of their loved one.

What involvement and support (if any) did UBC, Guthy Jackson, MS Society, etc. have with the event?

As with the previous answer, all were very supportive in the way of advertising. The Guthy-Jackson Foundation and the VGH & UBC Hospital Foundation provided brochures and information to be included in our race packages as well as gifts for our event Volunteers. They also followed the event closely via email contact with me. VGH & UBC Hospital Foundation and the MS Society both had representative onsite for our event. The MS Society in British Columbia is making many changes right now that will include a lot more NMO Families in upcoming events etc. Our event video was included in the most recent MS Newsletter. We look forward to working more closely with all of these incredible foundations as we move forward to plan next years event.

How do you think fundraising is different in Canada?

I’m not sure that it is really. I think any time you are asking people to contribute to something, you need to know your stuff. I have been forced to educate myself on all things NMO, so that I can be an effective advocate for my son and for the many friends I have made worldwide that share this diagnosis. I think if people believe in the cause, they will have no problem donating to it. Sometimes that donation is financial and sometimes it is a donation of time or resources.

Do you plan to make this an annual event?

Absolutely!!!!! Next year is already in the works. Some other pretty amazing things have happened after this event as well. Our local Patient Day is in the works and I have been asked to share our story this year. I am also honoured to have been asked recently to co-host, with two other Advocates, the Advocacy breakout sessions at Patient Day in LA this year.

What would you do differently next time?

To be honest, I don’t think there will be a lot of changes. It would be awesome to have more onsite Sponsor support and I would love to at least double our fundraising for next year. We are looking at things we can do to make sure it is just as good or better for next year. I think more media involvement would also be great. I honestly think that the media missed an incredible story (9 stories really) of how a rare disease has been brought to light in our community.

Is there anything else you’d like to share?

I would like to say thank you to you wonderful Ladies for taking an interest in this journey and for taking the time to interview me and hear a bit of our story.

To my amazing NMO Family worldwide…you are the good that has come from this diagnosis. None of us chose NMO…it chose us and in doing so gave us each other to walk beside, lift us up and help us on this journey. I am grateful to have met many of you face to face and I look forward to meeting many more of you soon. You are the most courageous, supportive, loving bunch of people and I am so very blessed to have you in my life.

To Families and Friends of those who have the diagnosis of NMO…don’t give up on us. What we may share with you is but a glimpse of the reality. I know for me, it was horrible and terrifying in the beginning and I have never felt more alone. We are not looking to be fixed…just accepted for who we have had to become because of a diagnosis. I want to encourage you to be vulnerable and to stand with us and become a part of this journey. We need you beside us to be able to continue to fight effectively. Don’t ever underestimate the impact of a hug, a listening ear, a shoulder or a kind word. You do and can make a difference too. All my love to all of you.

You can read more about Riley and view our event video at www.nomorenmo.com

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8 Comments

  1. Lelainia Lloyd

    Nancy did an incredible job. I was there & was one of the speakers at the opening ceremony. It was incredible to see a sea of green, 370+ people whose lives were touched in some way by NMO. I was especially touched that local politicians (some of whom are friends) made the effort to come & support us. We are getting the word out about NMO in Canada!!

    Comment by Lelainia Lloyd on June 25, 2013 at 2:25 am

  2. Jenna

    Lelainia, thanks for sharing your angle from the event. That was also so brave of you to speak and share your story! Thanks for your contribution.

    Comment by Jenna on June 25, 2013 at 12:29 pm

  3. Amy Winters

    my daughter was recently diagnosed with NMO. She is 22 and has two little boys. We are going to Mayo clinic in Scottsdale az in july. Any info u have would be great. Thank you for all u do

    Comment by Amy Winters on June 25, 2013 at 3:35 am

  4. Jenna

    Hi Amy. Thanks for your message. We’re happy to answer any questions you may have privately via email if that works better for you. Reach out to us at nmodiaries@gmail.com
    Alternatively, you can check out our resources page for links to other sites like the Guthy Jackson Foundation that has tons of resources.

    Comment by Jenna on June 25, 2013 at 12:31 pm

  5. Kyra

    You are a fantastic NMO advocate!. I am personally honoured you are working on this hugely important cause. Thank you for your endless effort!
    Kyra Bell, RN – living with NMO.

    Nancy, Riley and I first met at the MS 5 km walk in Penticton, BC in May 2013

    Comment by Kyra on June 25, 2013 at 3:54 am

  6. Jenna

    Thanks Kyra. We also think Nancy is a great advocate for our cause.

    Comment by Jenna on June 25, 2013 at 12:31 pm

  7. Susan

    I have had 5 Optic Neuritis attacks in one year…doctors were first treating me for MS then NMO. I was give two IV treatments of Rituximab and 5 days after my second IV treatment I was hit hard with two back to back Optic Neuritis attacks. I am now getting IV steroids to try to get eyesight back. Left eye completely blind…right eye still has vision. I am depressed as this was the miracle medicine to try to keep me from getting attacks. I can’t even find anything homeopathic to take…it is terrible to just be so helpless on having anything to help yourself with. All the reports I find on line read that I will be going blind permanently eventually. I also am interested in starting benefits for research here in Connecticut, USA…never did anything like this before but I don’t feel like there is enough research being done…and I need to do something…so any directions I would appreciate

    Comment by Susan on October 17, 2013 at 9:19 am

  8. Jenna

    Hi Susan,

    Thanks for your message. I’m sorry to hear that things haven’t gone well. Rituximab isn’t the “miracle drug” but is the most common drug used to treat NMO. It has varied results depending on the patient. Although you have had several ON attacks, it does not guarantee that you will eventually go blind. That being said, the probability is greater because of the number of attacks you’ve had.

    As far as research, the Guthy Jackson Foundation has been doing a great job of utilizing collaborative medicine to research. If you google them you’ll find them. You may want to consider becoming a Patient Advocate with the foundation.

    Comment by Jenna on October 21, 2013 at 10:30 pm

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