LA NMO Patient Day 2015

Arriving in LA, March 3rd, 2015.

Arriving in LA, March 3rd, 2015.

So I’ve just returned from my first NMO Patient Day in Los Angeles. I am still processing the experience- I think it will take a few weeks for everything to sink in. I was mulling over which parts I wanted to share with you because obviously, there’s alot that goes on at an event like this. I think I will go with the things that stuck out for me.

victoria

GJF founder Victoria Jackson welcoming everyone to NMO Patient Day.

First of all, the Guthy-Jackson Charitable Foundation was only founded six and a half years ago. At that time, there were NO clinical trials for NMO. There are now THREE being set in motion which is absolutely incredible! At Patient Day, we had the opportunity to hear from representatives from each of the three drug companies, Alexion, Chugai and MedImmune that are running the clinical trials. They did a great job explaining in layman’s terms how each of their trials worked. It was good to hear the facts and to be able to ask questions. Because NMO is so rare, we are being encouraged to participate in the clinical trials if we meet the eligibility criteria. This is our opportunity to actively help find the cure for NMO.  More information about these studies can be found here at NMOtion: http://nmotion.guthyjacksonfoundation.org/

The second thing that I noticed at Patient Day was the sense of community. It was heartwarming to see everyone looking out for everyone else in our time together. As a first time participant travelling solo to LA, I especially appreciated how everyone was welcoming and inclusive. The GJF staff were especially kind. The day after the conference, some participants had their flights cancelled due to inclement weather at their home destinations. I saw a post on the Facebook group saying that someone who was staying an extra day had a spare bed in her room if anyone was stranded and needed accommodation for the night. It’s that kind of generousity of spirit which really impressed me.

 

I had the chance to share some of the ways in which I advocate for NMO awareness through the UBC Interprofessional Health Mentors Program and as a Community Representative for the MS Society of Canada. While I wasn’t at my best, (I sustained a fractured rib the week before and was still in a considerable amount of pain) it was really nice to have people come up to me afterwards and offer such positive feedback about the work I am doing. I really appreciated the support. I always feel so blessed to be able to serve and do the work I am most passionate about.

Manhattan Beach, LA

Manhattan Beach, LA

I also had the opportunity the day before and the day after to do a little sightseeing. On Tuesday I took a shuttle bus to Manhattan Beach, which was beautiful. White sands as far as the eye can see. Apparently when Waikiki, Hawaii was establishing itself as a tourist destination in the 1920’s and 30’s, they actually-get this-imported the white sands from Manhattan Beach to transform their rocky beaches! I had a great time wandering the little seaside village and just because I could, I had ice cream for lunch.

Selfie on the Hollywood Walk of Fame.

Selfie on the Hollywood Walk of Fame.

Thursday, I took the hotel shuttle to the airport and caught a shuttle bus to Hollywood to see the Walk of Fame. I had a good time wandering Hollywood Blvd. and seeing so many familiar names. I talked to all kinds of interesting people and even found a penny press machine. My son and I collect pressed pennies, so I was pleased to be able to add three more from this trip. I ended my day in Hollywood at my home away from home, Starbucks at Hollywood and Vine. I don’t usually do the touristy thing, but it was fun to visit somewhere I have seen on TV and in the movies for years.

Jenna & I being photo bombed by her makeup artist at the Makeover Party.

Jenna & I being photo bombed by her makeup artist at the Makeover Party.

I feel really fortunate to have been able to attend LA NMO Patient Day. It was an amazing experience and one I hope to be able to do again next year. I am also grateful for the new friends I made and the old friends I caught up with. Those connections are so incredibly important and I really believe together we are so much stronger. Thank you to Victoria Jackson, Bill Guthy and the GJF Foundation for hosting NMO Patient Day and for everything you do to fight for those living with NMO. Thank you for being all in.

09
Mar 2015
POSTED BY Lelainia Lloyd
DISCUSSION 3 Comments

3 Comments

  1. Hola, siempre les escribo en inglés, pero hoy decidí empezar a escribir en español, pensando que la NMO también llega a las personas y países de habla hispana, así como me llegó a mí. El 9 de marzo es, curiosamente, mi cumpleaños. Festejé mis 58 años y hace más de 4 que vivo con síntomas claros y diagnóstico de NMO.
    Sería bueno contactar con otros que estén pasando por esta experiencia, que para mí fue fuerte, difícil y renovadora.El proceso me llevó a liberar mis potenciales artísticos, que circulan bajo el nombre de Matilde García Pérez, no porque reniegue de mi vida anterior, sino porque, precisamente ésta es una nueva faceta, mi alter ego artístico…
    Hay mucho por compartir y contar.
    Doblemente, Teresa Madariaga y Matilde García Pérez

    Abrazos

    Comment by Teresa Madariaga on March 19, 2015 at 1:13 pm

  2. Jenna

    Hi, I always write them in English, but today I decided to start writing in Spanish , thinking that NMO also reaches people and Spanish speaking countries and it came to me . The March 9 is , curiously , my birthday . I celebrated my 58 years and more than 4 Live with clear symptoms and diagnosis of NMO .
    It would be good contact with others who are going through this experience , which for me was strong , tough and renovadora.El process led me to release my artistic potential , circulating under the name of Matilde García Pérez , not because renege on my previous life , but precisely because this is a new facet of my artistic alter ego …
    There is much to share and tell.
    Twice , Teresa Madariaga and Matilde García Pérez

    hugs

    Comment by Jenna on April 20, 2015 at 6:35 pm

  3. Lelainia Lloyd

    Hi Teresa,
    So glad you have enjoyed 4 years of good health while living with NMO. Congratulations! Having a creative outlet really helps! I hope that you continue to be in remission. Thank you for taking the time to write.

    Comment by Lelainia Lloyd on April 27, 2015 at 5:04 pm

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