Guest Blogger Lisa McDaniel talks about: Why she is a strong advocate for NMO Patients


Why do you do it? How can you work with NMO patients after you lost your son to this horrible disease? Those are questions I hear quite often as I work within the Guthy Jackson Charitable Foundation as well as from those in my personal life. There is a simple yet complicated answer. The simple answer is I do it because I care and because it is important to me. The complicated answer goes much deeper.

For those who don’t know our story, I will give you the short version. Our son, Collin, was barely 5 in 2007 when he first lost his vision. It took a few months before he was diagnosed with NMO. His course was very severe with constant flare ups of optic neuritis as well as transverse myelitis. After 4.5 years of suffering and fighting with everything he had within him, Collin passed away on March 29, 2012, at 9.5 years old (we must remember the .5 according to what he always told us). Yes, it is a very sad story if you stop there. Of course, we were and are still heartbroken and we still miss him tremendously. However, those who have followed this story and lived it with us know our story did not stop after his death.

A google search in early 2008, led me to very negative information about NMO. It also led me to an email group where I met some amazing people online. Those people became my family’s lifeline and helped me to learn everything I needed to know about NMO. I learned about the correct medications for NMO, the differences between medications for a flare-up versus medications for prevention of future flare-ups, what to look for to recognize a flare and other things NMO patients and families need to learn. The information I learned was great, however, well beyond the information I gleaned was the sense of support and family I received.

In 2009, I was able to attend the first ever NMO Patent Day in Los Angeles, CA. It was overwhelming as well as amazing. It was the first time our NMO community had been able to come together outside of the email support group. I met and interacted with doctors who took an interest in Collin and did their best to help us figure out the right combination of medications for him. I remember leaving LA filled with hope for the first time since Collin had been diagnosed. I vowed then to attend every Patient Day I could.

Throughout the years of Collin’s battle, I became close to many of the patients and families, as well as doctors in the NMO community. When Collin passed away, it was devastating to our family, however, it was also devastating to the extended “family” we had met through NMO. It was at then I knew I had to stay in contact with those incredible people, but I also knew it was time to change the role I was in with them. It was time I gave back to them a little of what they had given me and my family. Not long after Collin’s death, I had the opportunity to go to work with the Guthy Jackson Charitable Foundation as the Consulting Advocate.

I am honored to be able to serve the NMO community. I love working with the patients and families as they seek information and support. One of the best things about working with the families is empowering them with knowledge and helping them learn to advocate. Advocacy is very important when a rare disease is involved, whether it is advocating for a loved one or for one’s self. As we build knowledge, we can build awareness in the world and with awareness, a diagnosis may be quicker. Education is important so patients know when to call their doctors and fight for what is needed. We don’t need to have huge plans and goals to advocate, we only need to make our minds up to take any size action. To quote Edward Everett Hale, “I am only one, but I am one. I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can do.”

It is incredible to make a difference in the lives of others. It amazes me how I am called upon to help educate doctors and medical staff about NMO, which in turn helps future patients. I am just a simple mom who wants to make a difference and wants to continue fighting a battle one little boy started. I, like Victoria Jackson, am just a mom on a mission! I have a heart for my NMO family and I have a passion for helping them. That doesn’t make me special, it just makes me willing. I am humbled to continue the work Collin led me to. I am not writing this to toot my own horn, but rather to share a beautiful story with you. Realize, this story is not about me, but about what can happen when a life is changed. If you want to know anything about Collin at all, know he was an incredibly compassionate child and I have no doubt at all he would want me to be helping those who are going through the disease which took his life. I am not stronger or better than anyone reading this and everyone is capable of doing what I do.

Another way Collin encouraged me to make a difference was through The Collin McDaniel Hope Foundation. My family and I started CMHF along with our Co-founder, Johnnie Sue Gilbert, whose son Nathan is living with NMO. It is our mission to make life just a touch easier for families who have children diagnosed with NMO. CMHF helps with medications, travel, wheelchair ramps and other things children diagnosed with NMO may need. While it is a small non-profit, we have been able to help many families in the last 3 years.

While my work is incredibly painful at times, it is also incredibly rewarding. Why do I choose to do it? All because God chose me to be the mom of one little red headed boy who changed my life and touched immeasurable others in his short life. To me, this is Collin’s legacy and that is the real answer to the question, “Why?”.

Patient Day 2016

Guthy Jackson NMO Patient day is always a special day for me. It’s the one-day a year I get to connect with my NMO family. This year marked my 5th time attending this special day, this year I brought my mom. I wanted her to meet my NMO family and some of the doctors that I have talked with. Every year at Patient day Ms. Jackson does a fabulous job putting on this event for patients. It is such a great opportunity for patients to connect with each other and talk to some of the top NMO doctors. It is so nice to talk to another person that has NMO and talk about what you are feeling and they completely understand. This event is so special Ms. Jackson has doctors all over the world to come talk to us patients about whatever questions we might have. Also patients get to find out what’s happening new in the medical world of NMO.

The big topic this year was researchers talking to us patients about trying medical trials for new drugs for NMO. It was very interesting and there were some good points made about this topic. If you are interested to learn more about the clinical trials please visit the Guthy Jackson website there are some great resources there. The also had several breakout sessions this year from asking the Docs, nutrition, mediation, navigating insurance, managing pain and simplifying the science of NMO. It is a day where you can learn as much as you can about having NMO or being a caregiver for a NMO patient.

The other big thing is donating the blood to the Circles program that hopefully helps a cure for NMO. I strongly encourage you to do this if you are a NMO patient and your family. We all have a piece in this very large puzzle and we need to work together to help find the cure.

When the conference is all over with the patients gather around and have dinner and just talk to each other and have a good time. We are all like one big family and we really enjoy spending time with each other and like I said this is a one-day thing we get to bond like this. Its hard to say goodbye at the end of the night to each other. But we know in 364 more days we will be reunited together again.

IMG_0831 IMG_0836 IMG_0843 IMG_0841 IMG_0840 IMG_0839 IMG_0838 IMG_0844 IMG_0848 IMG_0846 IMG_0850 IMG_1199

Guest Blogger Heather Sowalla NMO and Teens

A few weeks ago, thanks to the Guthy Jackson Charitable Foundation, I was able to attend the 2016 NMO Patient Day in Los Angeles. And, unlike in other years this year I had a purpose. I was to lead a support group meeting for teens and young adults with NMO the day before the conference. I have to admit, I was a bit nervous. I’ve always been good at public speaking and leading discussions, but this was going to be a completely different situation than my norm.

To be honest, even in the world of NMO, I think people often forget about the teens that suffer from NMO. We hear the stories about children and our older adults, but we don’t hear much from the teen age groups. Where do they fit in? They aren’t really adults yet and they aren’t little kids, so we’re faced with the dilemma of where they fit into the NMO community. They are old enough to understand what the doctors are doing to them and why. It’s because of this reason that I was approached at the 2015 NMO Patient Day, to create a place where the teens and young adults can talk freely about their issues, and I have been moderating that group since then.

This year, for the 2016 NMO  Patient Day, I was approached about running a support group for the teens the afternoon before the conference, and truly I feel it made a difference. A group of around eight people were able to come together to talk about NMO. I wish it were under different circumstances that this amazing group of individuals got to meet, but we were able to come together and it was amazing. Some of the teens in attendance had never met another person with NMO before, let alone another teen. So, during a time when they feel sick instead of feeling alone they can fall back on that first meeting and how even if life is no longer in our control that we can find methods of coping, which we discussed in the meeting.

The largest issue all of my teens agree on is how they can or cannot maintain an active normal teenage life on top of trying to control their NMO and symptom management. Teens are emotional. They don’t necessarily have the life experience that adults have, and it can cause their emotions to get mixed up and they can easily become frustrated and angry. That is something I am proud of, of my support group members. They were there. They were aware. They wanted to ask questions and get answers. Having NMO is difficult enough without the added stress of friends, dating, driving, school, etc.

Something we discussed was relationships. With family, friends, and significant others. It came across that most of the teens in the group feel as though they are isolated and that no one understands them, and that nobody gets what it’s like to spend days, weeks, or even months in the hospital and it can get depressing. But, there is always that one friend, the one that brings you chocolate and chips and sneaks soda into the room.

I’m glad to say that bringing these amazing teens together has allowed them to create a bond they may not have otherwise. No longer are they fighting their battle alone. Together, standing tall, they speak out about NMO and fight to find a cure.

We have a few things being prepared for this group of amazing young individuals. Between the online support group I am working with the Guthy Jackson Charitable Foundation to put together a teleconference so the teens can have the opportunity to talk over the phone with one another about life’s events, NMO, and how they are or aren’t coping. It’s an amazing way to bring them together and start a dialogue that in recent years we didn’t have available for our younger NMO community members.

Happy Birthday Allen

Happy 3rd Birthday Allen! I can’t believe three years have gone by already. I feel so blessed that I am his mother. Every year around his birthday I can’t help myself to reflect on the journey Eric and I went on to have him. I remember when I was first diagnosed I just cried cause we didn’t know for sure if I could have kids and if I would pass NMO on to them. After seeing some pretty incredible doctors they assured me I could get pregnant and there was a very small chance I could pass NMO onto my children. I am just so happy and blessed Allen is a healthy boy!


Allen is quite the character and really building up his personality. I have really seen him grow up this last year. I love how much he can talk now and the stuff he comes up with can always make Eric and I get a good laugh. He is 100% boy; He loves his cars, tractors and trains. His favorite thing to do is tell me he is a racecar and makes racing noises as he runs through the house. Allen is almost 100% potty trained we have been working with him for a month now and he is getting pretty darn good at it. Allen also got a new room and bunk beds this last month. He was pretty excited since I decorated his room in cars for him. He now calls his old room the baby’s room. Allen kind of knows there is a baby coming soon. If you ask him where the baby is he points to my tummy. I know he will be a great big Brother!


Introducing our new blogger – Lelainia Lloyd

Several years ago Mike (my then fiancé) and I found ourselves at the Guthy-Jackson Foundation Patient Day. After asking a question, Erin found me on one of the breaks because she had a similar question. We started talking and also met Christine in the lobby bar. Before soon, the 6 of us (spouses and us) found ourselves at a sushi dinner. Call it fate or by chance, but NMO Diaries was born over that shared meal.

This blog was a form of therapy for each of us but also a way to give back to the NMO community. You see, several years ago, if one were to Google neuromyelitis optica, it offered a frightening tale that our lives would be over. Determined to not have this disease defeat us, we wanted to share our lives and how we planned to move forward.

Fast forward to today, I’m very proud to say that each of our lives has developed further than any of us would have imagined. There’s so much more each of us wants to do and now we see it as a possibility because of the love and support we’ve received from the NMO community, our families and our friends.

That being said, it’s time for us to include a new blogger to join us permanently on NMO Diaries. I’m very pleased to introduce each and every one of you to Lelainia Lloyd. Based in British Columbia, Canada, Lelainia is just a few years older than us, is very involved with the MS Society and will offer her experiences as a new perspective. To learn more about Lelainia’s NMO journey check out her “About Us” link here.

Thanks for joining us on NMO Diaries. We hope we continue to inspire and motivate each other to live life to its fullest.

Patient Day 2013

Patient Day 2013 was a little bit of awesome. Ok, it was a whole lot of awesome. When I compare my first Patient Day in 2010 to this year (I missed last year having a newborn) I was able to absorb so much more information.

In 2010 I was newly diagnosed with neuromyelitis optica (NMO) and I swear I thought I was the only one, especially in Canada! We were also newly married so as if that doesn’t come with its own challenges, my husband and I had no idea what life with NMO would really be like. I stumbled on the Guthy Jackson website and without much thought I knew I had to meet other patients. When I think about it now I can’t believe I was scared to speak to other patients, especially those I perceived as having it worse. I’m embarrassed to say it now but back then I thought by speaking to those in wheelchairs or with walkers or with visual impairments I would somehow get sicker, even though I’d experienced all that and more. In short, I wasn’t ready to admit I was one of us.

This year another patient and her husband sat at my table – it was their first time. I wondered why they were so quiet until in the evening at the bar they admitted how overwhelming it all was and I instantly recalled my first year. I’m kicking myself that I didn’t focus more on them ’cause after all, we should be there for each other. So other patient (who I won’t name here): take comfort that next year you’ll know us and although I wish we could have met for another reason, you are both part of this amazing network with nothing but endless love and support.

I love my NMO sisters Erin and Christine. They took me under their wings in 2010. For that I am grateful. I am also grateful that my best friend, Andrea, joined me this year. She has been one of my constant supporters and I love that she met the girls, the other amazing patients and we finally had our best friend trip.

Me with super mom, Nancy Reimer, who organized the very first NMO walk/run, and her son Riley.


Erin Miller is obsessed with Sprinkles, the cupcake shop in Beverly Hills, so every Patient Day we make time to trek out for our bedtime snack.











Look everyone!  It’s another workaholic NMO patient! (Me with Sandra Adda.)










With Courtney Engel, me, Christine Ha and Erin Miller.








With my best friend Andrea in front of the famous Chinese Theatre.











Patient Day 2011

THANK YOU THANK YOU THANK YOU to the Guthy-Jackson Charitable Foundation for arranging yet another successful Patient Day.  Thank you so much for having us and always being in our corner.  Patient Day was a great chance to re-educate and receive new information on Neuromyelitis Optica (NMO).  More than ever, I’m confident that they’ll find a cure one day.  Some exciting stuff I gathered from the event:

  • An aquaporin map treatment is in the works to creat good antibodies.  A paper was recently released by Dr. Alan Verkman.
  • Talk to your doctors about the flu shot but in general, the benefits usually outweigh the risks for NMO patients.
  • Be more active and wash your hands!
  • Remember to get regular check ups like the rest of the population (ie. Melanoma could be a side effect of long term use of Cellcept).
My favourite break out session was definitely the Nutrition and Diet.  Led by John Pierre (who is Ellen Degeneres nutrition guru), he made a very effective argument towards a plant based diet.  Having tried a vegetarian lifestyle for a couple of months this year, I did see results and did feel much better.  I came home energized to try it again and so far in the last couple of days I’ve lost a few pounds and have regained some of my energy.  Although, I did try his gluten free, sugar free blueberry muffin recipe and I’m honestly not a huge fan.

Here are a few highlights from our trip: