An intimate interview with Nancy Reimer, NMO Advocate

This week we’d like to showcase another “Mom on a Mission” Nancy Reimer, who is the mastermind behind the very first dedicated NMO (neuromyelitis optica) Walk/Run. It’s difficult not to cry reading her candid response to our very intimate questions. Always honest, sincere and tough, Nancy took time to respond to our questions from her home in British Columbia, Canada.

nancy

1. What motivated you to start the first NMO dedicated walk/run?

I think if I am being completely honest, my motivation for starting the first NMO dedicated Walk/Run was anger and grief. We all have our own ways of dealing with the tough stuff in life and for me I felt like if I did not find a positive outlet for my feelings of anger and grief surrounding Riley’s diagnosis, that I would likely go under and not resurface. It was excruciating as a Mom to go through that first year and to not have a diagnosis really until his fourth relapse. To hear the words “no cure” almost did me in, however, it was around that time that the idea to have an event specific to NMO entered my mind. Organizing this event gave me a positive focus…something that I could do in my own community to raise awareness and funding specifically for Neuromyelitis Optica. When I started planning the event, I was surprised that there were others with the diagnosis who immediately reached out to me. It then became something that extended out much further than Riley’s diagnosis.

2. Were you always planning to make it an annual event?

I remember the final weeks leading up to the first ever event thinking, “what if nobody comes”. Silly really, because so many had registered…we ended up with around 400 that first year. I think my thought process was to just see how year one went…then year two…and now we are leading up to year three! Never in my wildest dreams did I imagine that it would ever go beyond year one. It has become this incredible place of support for those who live with NMO and their families. This event has given us all something that we “CAN” do to make a difference. We cannot change the diagnosis, but we can rally together with our supporters and be there for each other while we educate our communities about NMO.

3. What improvements to the event are you planning for this year?

Each year I look at what worked and what did not. I have to say that both years so far have been pretty darn amazing. Last year we added a few more sponsors, a KidZone and onsite yoga classes. We were also delighted to have a local dance school come and do a flash mob at our event. The onsite Sponsors are incredible and most have been with us since year one. When looking for Sponsors, you are asking people/businesses in the community to believe in both the cause and that your event will succeed. You never know what kind of support exists unless you are willing to ask. So for this year, we have all of our amazing Sponsors coming back, some fantastic post-race entertainment and snacks…don’t forget the snacks!!!!

4. Fundraising certainly has its challenges. What advice would you give to those who do so yearly? How do you keep it relevant and fresh?

Fundraising has been a challenge. I struggled a lot with this aspect of the event last year. Our registration fees are part of our fundraising efforts and that is the easy part, but asking for donations above and beyond has, in the past, been a challenge. When you are asking people or businesses to donate, I have found that most need to have that personal connection to the cause for them to fully be able to identify with it. Unfortunately, many do not identify with Neuromyelitis Optica. Some are willing to listen, while others are not. I have learned to give a brief synopsis of the disease and leave a letter with more details and unfortunately, unless they take the time to read the letter or our personal story, I rarely hear back. That was tough for a few of us last year but then as we started to really look at the event, it occurred to us that maybe that’s not what this event is about. Yes, it is so amazing to be able to contribute financially to the cause and ultimately the cure, but maybe our event serves a different purpose. There is nothing that has been so healing to me as standing before that “sea of green” and seeing that visual support all at once. It is several communities standing together, unified in their support of a cause…our cause. There is not a price tag for that…the support onsite on event day is priceless!!!! To me, if I can provide that for the people who have this diagnosis, then I have done my job well.

5. Riley is another year older so he’s another year wiser. How do you feel this event impacts him on a personal level?

This is a tough one. Riley does not often verbalize what he feels about his diagnosis or about the event. He was only 7 when NMO entered his world and I think for him the event has just become a part of that. Perhaps as he gets older, he will realize more, like I have, the magnitude of the support that stands before him and that this event came to be because he was diagnosed with Neuromyelitis Optica. It was created based on his personal diagnosis. For Riley, life has really normalized in the past couple years. The beginning of May marks 3 years of stability for him. That is huge. I remember the panic of that first year and I wondered if this disease would ever give him a break or if it would be a lifetime of relapses, hospitals and rehab centres. I remember the severity of some of his relapses and wondered if he would live, if he would move, if he would walk again, if he would be able to see…we’ve come a long way baby!!! I am beyond grateful for his stability and he is very blessed to have an amazing team of Doctors that have made it their priority to keep him that way.

riley

6. To quote the Guthy-Jackson Foundation, you’re another “Mom on a mission”. How do you stay inspired and motivated?

My motivation wakes up in the room across the hall from me every morning. I walk in to see the mop of curls on his pillow. My heart still skips a beat when he does not respond right away. I have learned over the past few years, what it means to be a “Mom on a Mission”. Simply put, a Mom on a Mission is a woman driven by something that puts her child/children in danger, and will fight to the ends of the earth to change that for her child/children. I have had that feisty attitude my whole life and I am learning now to channel it into something good. Both of my children know, without a doubt, that I will always fight for them and will bulldoze anything, Neuromyelitis Optica included, that puts them in danger. The last couple of years have been hard for me. Once I got through that initial flurry of the first year full of attacks, diagnosis and then, finally, stability, I saw the damage…the backlash of the ordeal. The thing is, when you are fighting for a child, your child, you do not feel the plummet to the bottom of the totem pole. I was not a priority and have suffered more than most know, as I have become quite good at just carrying on with life. A car accident in the midst of all of this, just added to that by introducing chronic pain into my body. This year so far has been about healing me. I am, as best as I can, making myself and my own health and recovery, a priority. I still have moments where I plummet, but I never camp there for very long. I have a job to do and in order to do that; I need to be the strongest, healthiest version of me. My motivation now reaches around the globe. My fight is no longer just about my child anymore. It is about every person, anywhere, who has received diagnosis the of Neuromyelitis Optica. We are this amazing family and I honestly do not know how I have lived my life up to this point without these incredible people in my life. I am inspired and motivated daily by the people who were brought into my life through this diagnosis. I am so very proud to be a part of a rare disease family that together will find a cure for Neuromyelitis Optica…I truly believe that!!!!

7. Tell us how people can get involved and all the details of this year’s event.

7. You can get involved in our event by being there if you are able to do so. For those who cannot be physically there, we added a Virtual Participant option to our registration, last year, which allows anyone…anywhere in the world, to register for $10 and support our event and the cause. To symbolize that support, I write all of the virtual participant’s names on my shirt and wear it to the event so it is as if you are there. My goal this year would be to have a really full shirt of names. Our event supports two charities… The UBC NMO Clinic and Research Program and the Guthy-Jackson Charitable Foundation. Donation links to both are available on our family website along with the link to register for our event.
You can visit our website to register, make a donation or view our videos, photos and press from years 1 and 2 of our NMO Walk/Run. nomorenmo.com

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