Standing Up For Science

On April 22, 2017, I hit the streets of Vancouver to participate in the March For Science. This march was only one of many taking place around the world which included concerned scientists, researchers and citizens. The de-funding and muzzling of scientists is a global problem and affects all of us, whether we realize it or not. Science is not only what keeps us alive as a species but also keeps us moving forward.

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I created my march sign to reflect my personal stake in medical science. I’ve had incredible opportunities to meet and engage with MS researchers over the last 3 years and it’s led to a deeper understanding of the work they do and the fierce commitment they have to improving the human condition. I have also had the opportunity to hear from NMO researchers and clinicians from around the world about the progress they are making in understanding NMO and the clinical trials that are currently in progress. All of this fuels my passion for advocacy and awareness for both NMO and MS and was why I was out there pounding the pavement along with 2000 others on a Saturday morning in April. It was a perfect opportunity to raise awareness on so many levels.

My friend Lori, who is a nurse, very kindly knit me a brain hat to wear to the march and she did a fantastic job. So many people at the march asked me where I’d got it.

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We walked (I’m guessing) about 3 km on the traditional, unceded territories of the Tsleil-Waututh, Squamish and Musqueam Nations, from the Queen Elizabeth Theatre to Science World at Creekside Park. I was pretty ill that day with a fever (I didn’t know until a few days later I had a bacterial chest infection) so a good portion of that walk was a blur to me. I do remember thinking was a privilege it was to be walking peacefully in my city and standing up for the things I believe in. The Vancouver Police Department was there, very kindly stopping traffic so we could march safely.

I also remember thinking of one of my favourite quotes by Rumi that says “There is a community of the spirit. Join it, and feel the delight of walking in the noisy street and being the noise.” It felt empowering to be a part of this community; marching in solidarity and knowing that the same thing was happening in countries all over the world on the same day-there were even a handful of scientists in Antarctica who held their own march!

My favourite part was reading all the signs people had made. My friend Tam had even held a sign making party at her store. This was one of the signs I recognized from her photos of the event:

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The Vancouver Aquarium group had these very cool jelly fish umbrellas they were carrying:

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When we got to Science world, my friend Julie found me in the crowd and we hung out listening to the speakers and entertainers for a bit before I had to head home to bed. Here’s a shot of her awesome socks:

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I am glad I went and would do it again in a heartbeat. (Though preferably not while feeling like death warmed over!)

16
May 2017
POSTED BY Lelainia Lloyd
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Thoughts on my recent diplomatic work in Jordan

Women's initiative event

Showing Jordanian women how to make buttermilk biscuits

I just returned from a culinary diplomacy tour hosted by the U.S. Embassy Jordan in Amman. It was my first time to the Middle East, and I thoroughly enjoyed it in spite of the turmoil happening in neighboring Syria. The people I met in Jordan were friendly and hospitable, the food fantastic, and the overall experience memorable. I ate the national dish of Jordan, mansaf, which consists of braised lamb shank, rice, and a fermented goat milk sauce. I ate falafel, shawarma, kibbeh, kofta, kebabs, hummus, labneh, tabbouleh, and tomatoes stewed in amazing olive oil called galayet. Perhaps two of the most memorable things I tasted were eggplant and kanafeh. The eggplants were often grilled or roasted and tasted superb—never before had I loved eggplant as much as in Jordan. They would be mashed into yogurt or tahini and made into a dip called moutabel. Kanafeh is an Arabic dessert consisting of melty cheese topped with crispy vermicelli-like pastry, doused in rose syrup, and garnished with pistachios. I loved it, and I’m not even a sweets person.

But I digress…

Mansaf

Mansaf, the national dish of Jordan

While in Jordan, I participated in several events with key messages ranging from women’s empowerment, disability awareness, and youth culinary education. The main takeaways I tried to leave behind were the universality of food and, thus, the relations between America and Jordan and, therefore, humankind.

Petra

Petra: one of the 7 wonders of the world & where Indiana Jones and the Last Crusade was filmed

Every time I am invited to participate in events like these, I am reminded of the bigger picture of my life: that is, I lost my vision, which made my story and accomplishments unique on MasterChef, which allowed me to achieve a certain amount of fame, which I can then use to raise awareness and advocate for social issues like the rights of women, Asian-Americans, and those living with disabilities and/or vision loss. I am also reminded of my fortunate circumstances in that, being a Texan, I was provided certain resources through the Division for Blind Services at the Texas Department of Assistive and Rehabilitative Services; without this agency, I would not have been able to receive orientation and mobility training, learned how to use computer screen readers, go back to school for my MFA, relearn how to cook, and live a more independent life. I feel lucky that I come from a place where such support is available. In countries like the Dominican Republic, where I also recently visited, and Jordan, such resources are still in their infant stages, if they even exist at all.

Arabic dishes

Our dinner spread of Arabic dishes

My message today is just to remind us of our blessings and that the world can still use our help, no matter our abilities and backgrounds. You don’t have to fly to the Middle East for Embassy work; you can just start with small things. Donate $20 to a charity in whose mission you believe. Educate your friends, family, and community of a cause about which you feel strongly. Identify your gifts and talents, find your passion issues, and think of a way to contribute. They don’t have to be big leaps. Remember that all movements started with one person taking one small step forward.

Dead Sea

Dead Sea: A mini-holiday between days of work

I truly believe it’s this attitude that has helped me remain resilience throughout my setbacks with Neuromyelitis Optica/NMO and vision loss. We feel the most joy when our lives have purpose. Today I challenge you to do one small kind thing for someone else. If we could all think and act this way, maybe one day, there will be peace in the Middle East.

Kanafeh

In Amman, I fell in love with kanafeh.

17
Apr 2017
POSTED BY Christine
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The 2017 Guthy Jackson Foundation NMO Patient Day is tomorrow, Wednesday, March 15

Every year when the annual NMO Patient Day sponsored by the Guthy Jackson Foundation rolls around, I get nostalgic since that’s where this blog was born.

Unfortunately, I haven’t been able to attend for quite a few years since I’m always tied up with other events during the Patient Days. I know there are many patients and caregivers who are also unable to attend, and the nice thing is the GJCF will often stream or upload key videos from the day’s events online for worldwide viewing. You can check out this year’s events by visiting the 2017 NMO Patient Day webpage. I heard they’ll be active on social media this year, too, so be sure to check out the GJCF Facebook and Twitter for updates.

If anyone is attending in person or remotely this year, we welcome your comments.

Representing at the 2016 EndMS Conference

Clockwise: EndMS Conference, Lelainia with Juan Garrido, fellow Someonelikeme.ca blogger;  with Dr. Karen Lee, VP of Research, MS Society of Canada; with Dr. Sam David, neurologist, professor McGill Univeristy & grants committee chair.

Clockwise: EndMS Conference, Lelainia with Juan Garrido, fellow Someonelikeme.ca blogger; with Dr. Karen Lee, VP of Research, MS Society of Canada; with Dr. Sam David, neurologist, professor McGill Univeristy & grants committee chair.

Hi Everyone! This is the first chance I’ve had to wish everyone a Happy New Year! I hope everyone had a good holiday season. Today I wanted to share a bit about how I wrapped up 2016.

The first week of December, I flew out to Toronto at the invitation of the MS Society of Canada to participate in HEARMS day (which stands for Hope and Engagement through Accelerating Research in MS) and the ENDMS conference. HEARMS day is an opportunity for junior MS researchers to meet with and learn from MS community members who share their personal perspectives about why research is important and what areas of research should be further explored. (Many researchers only work with lab animals, so they don’t get to interact with the actual human beings their research affects.) We spent an entire day having deep and meaningful conversations and sharing information. It helped remind them who they are fighting for and in turn helped community members understand the impact of the research dollars they raise and the importance of participating in research.

The ENDMS conference was attended by researchers from across Canada and around the world. There were four days of research presentations and while I did not understand 100% of the science presented, I understood a large portion of it. Part of that understanding came from spending the last two years serving as the Community Representative for BC, acting as a lay reviewer on the Personnel and the Clinical and Population Health grant review committees. I’ve read through numerous complicated medical research proposals and as a result, learned a fair bit of the language and concepts. While I was at the conference, I had a conversation with one of the researchers I worked with on the Personnel committee about some research (the anti-MOG research Dr. Levy is doing at Johns Hopkins, in fact) and he made a point of telling me that he could see how much I’ve learned and that I should be very proud of that. I’ve always thought of myself as a hardcore right-brainer, so hearing this from someone who lives and breathes medical science meant a lot.

When I was first asked to attend the conference, I wondered if I would feel intimidated being in the company of about 200 researchers and clinicians. From the moment I sat down with them, there was nothing but mutual respect and deep sense of solidarity in working together. It goes down as one of THE BEST experiences of my life. It was an absolute pleasure and honour to be a part of it.

The rewarding part of having all this amazing insight and information has been being able to share with my community here in BC. Because I have had the opportunity to learn with and from researchers, I have a deeper understanding of the work they do and where MS research is heading.  This allows me to make it accessible to others.  I am able to say “Here’s what I learned and here’s why it matters.” Being able to do this is really gratifying. People cannot champion what they don’t understand. Now when I talk to people about research funding, I’ve got the experience and knowledge to explain exactly what the impact is. It’s very empowering.

As an advocate, I am very passionate about patient inclusion. I believe we bring something very important the table.  I am so grateful that the MS Society of Canada continues to offer me the opportunity to advocate for MS and NMO patients. This is the work of my heart.

23
Jan 2017
POSTED BY Lelainia Lloyd
DISCUSSION 2 Comments
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Season 4 of Four Senses, my cooking show, currently airs on AMI TV

Since winning MasterChef U.S. Season 3 in 2012, I’ve gone on to co-host my own cooking show. Our studio shoot is in Toronto, which gives me the chance to visit with Jenna at least once a year.

Something of which a lot of people may not be aware is that a TV show’s shoot schedule is often highly intense and squeezed in to a short amount of time. One season of Four Senses, for example, is thirteen 30-minute episodes. We shoot two episodes a day (each one taking about 4 hours to shoot), and we film them all in seven days straight. The reason for this is it’s often very expensive to rent studio space and film equipment, plus everyone on cast and crew are contractors that have other work projects scheduled, so a producer can only snag people for X amount of time.

Many people I meet assume we are shooting each episode the day before it airs, or sometimes, people even think it’s live television (like in the case of MasterChef, people would meet me in the street while it was airing and be confused why I wasn’t in the kitchen that day).

There’s a whole different world called “television.”

I can’t believe it’s been five years since my season of MasterChef shot and aired, and four years since I started Four Senses, a cooking show with an accessible twist. Season 4 is currently airing on AMI TV in Canada on Thursdays at 7:30 PM ET/PT, but if you miss an episode or don’t live in Canada, you can catch the episodes online at AMI’s Four Senses website.

Happy watching and cooking!

16
Jan 2017
POSTED BY Christine
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Support NMO research today on #GivingTuesday

Thursday was Thanksgiving. Then we had Black Friday, followed by Cyber Monday. Today, instead of overeating and overspending in the spirit of gluttony and consumerism, why not donate to a good cause in the spirit of selfless giving?

#GivingTuesday is your chance to make a difference this holiday season. It’s a way to remember how blessed we are by supporting a cause that could benefit from our donations, whether in time or money.

Of course, since this is a blog about Neuromyelitis Optica/NMO, I urge you to support the Guthy Jackson Charitable Foundation this #GivingTuesday. All of the proceeds donated to the GJCF will be used to fund research for treatment and an eventual cure for this debilitating disease that affects all of us here at NMO Diaries.

To support the effort today, please visit the Guthy Jackson Foundation #GivingTuesday page, and be sure to reference #GivingTuesday with your donation.

Thank you from all of us at NMO Diaries, and spread the word!

Because…SCIENCE!

self-portrait-llcHello again! It’s so hard to believe there’s only a month and a half left of 2016 and then we will be welcoming a new year!

I am still recovering from being so sick over the summer, but am feeling better in terms of energy. I am still in a considerable amount of pain from RA and dreading the idea of having to confront that fact with my Rheumatologist next week. I was told that if the pain didn’t settle, I would likely have to add another medication into the mix. The problem is that the medication in question is an injectable. After having to give myself daily shots for 5 years when I was mis-diagnosed with MS, I am not keen on dealing with constant needles again. The other big deal is that the add-on med is chemo.  I’ve been through chemo before and it’s miserable. The thing is I really can’t go on with the level of pain I am currently in, so we’re going to have to figure this out. I intend to explore my options and see if there’s any way around having to do injections.

In the meantime, I am keeping busy-for the next three weeks I am going to be immersed in medicine from the other side. I am attending a day long MS/NMO ambassador’s annual session out at UBC this weekend. It’s a chance to learn about all the current research the MS Society of Canada is doing and we will also have the opportunity to tour the labs. I am excited about touring the labs because UBC does a lot of important research here in Canada and I know several of the researchers. Getting to peek behind the proverbial curtain will be both fun and interesting.

Next Friday, I am attending an all day meeting for the Association of Registered Nurses of BC’s patient advisory committee. I was invited to serve on this committee a couple months ago and this will be our first chance to meet everyone, set our agenda for the foreseeable future and elect a chairperson. I am looking forward to working will fellow health advocates to improve how healthcare is delivered in our province.

Next weekend is also UBC’s NMO Patient Information Day. It will be good to catch up on the latest in NMO research and clinical trials and to connect with our NMO community. We have a new clinical research coordinator for the CIRCLES study whom I look forward to meeting.

The first week of December, I will be flying out to Toronto at the invitation of the MS Society of Canada to speak to over 100 junior researchers about the importance of MS research. The event is called HEAR MS Day, which stands for Hope and Engagement through Accelerating Research in MS.  I just completed 2 terms as the Community Representative for British Columbia, serving as a lay reviewer for the grants competition and the MS Society of Canada felt my input would be valuable. I am very excited to be a part of this. I will also be attending the 4 day EndMS conference that follows. They are expecting over 250 researchers and health care providers from around the world to attend. There will be scientific presentations, trainee workshops, poster sessions and networking events. I am very much looking forward to contributing and learning.

I have always had a keen interest in medical science. When I was 5 years old, I wanted to be a forensic pathologist, (I know… I was a weird little kid. Clearly, I watched way too many episodes of “Quincy, ME.”) but  I would never in a million years have thought I would be so immersed in the world of medicine, research, education and advocacy the way I am now. I consider myself very right-brained, so all of this really is a departure from my wheelhouse. The thing that hooked me though is the learning-I am never happier than when I am being challenged to learn something new- I will immerse myself and soak up information like a sponge. The other big hook (and to me, the most important one) is the chance to make a difference. Someone I admire very much once said to find the thing you are passionate about and then pursue it with all your might. I am passionate about improving the human condition, especially when it comes to doing everything I can to help advocate for those of us living with NMO and MS. It is an honour and a privilege to be able to serve.

 

Before I sign off, just a quick reminder that UBC’s NMO Patient Information Day is coming up fast. For more information and to register, click here.

14
Nov 2016
POSTED BY Lelainia Lloyd
DISCUSSION 3 Comments
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Why I love Apple technology

**This post was originally published on my blog on October 28, 2016.

This video shows Sady, a woman with cerebral palsy, using Apple technology to edit videos. What’s mind-blowing is the video was actually edited by Sady herself using the very same assistive technology.

Last Wednesday, Apple announced the launch of their redesigned Apple accessibility website, which now includes videos showing how people of all ability levels use Apple technology to achieve vocational goals and do everyday tasks. These videos not only empower people living with disabilities, they also challenge everyone to rethink what a person can and cannot do regardless of abilities.

As you know, I’ve been a longtime Apple fan, and following my TEDx talk about the importance of inclusivity, I’m ecstatic that Apple continues to make universal design a priority.

Thank you, Apple, for keeping the bar high and being a pioneer for adaptive technology!

Signed,

An Apple Fangirl

P.S. In keeping with their mission, here’s an audio-described version of the above video.

https://www.youtube.com/watch?v=gL2Dh4_F2-M

01
Nov 2016
POSTED BY Christine
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Recap of my recent trip to Canada

Christine Ha and Carl Heinrich, hosts of Four Senses on AMI

Processed with VSCOWith my co-host, Carl Heinrich, owner of Richmond Station in Toronto and season 2 winner of Top Chef Canada

I was in Canada the second half of September filming the fourth season of my accessible cooking show, Four Senses. TV is much less glamorous than one would think: I get picked up around 6:45 AM every morning. We film two episodes a day, which has me on my feet for most of it, while trying to be energetic, making conversation with our guests, cooking, and then throwing scripted lines to camera. Because I’m vision impaired, I have to memorize my throws and try to find the camera with my eyes at the same time. This was what I did for seven days straight, as we filmed our entire 13-episode season in 7 days. Then after we wrap each day, I have a meeting with our director, producer, and my co-host to go over the next day’s scripts. Then I grab a quick bite and then study the next day’s scripts and guest bios until I finally get to bed around 11 or midnight. Then I wake up before sunrise and do it all over again.

All that said, being part of the industry has given me a new appreciation for the efforts that go into making a TV show. production is definitely labor intensive, and it takes a strong, hardworking team with everyone doing their job to pull it off. A production is only as strong as its weakest link. This season, our team consisted of 23 cast and crew.

What I like about television is the challenges it’s posed. TV really forced me out of my comfort zone—I’m an introvert and not naturally great on camera—and it’s gratifying to work hard together and know we’re doing something that helps others. In our case, it’s making educational entertainment that challenges those who are vision impaired to regain independence by returning to the kitchen.

I had a few days off in between my field shoots and studio run, so I got to see Jenna, her husband Mike, and their daughter Sophie. It was a rainy day, but we managed to grab lunch and some drinks at Mill St. Brewing before I attempted to hit hockey pucks in the downpour. (It was the hockey World Cup, and Toronto’s Distillery District had been transformed into a cocky village complete with carnival stations..)

The rest of our afternoon was spent traversing the mall downtown. My hubs, John, bought a Blue Jays hat, and Jenna and I combed Aritzia while our men discussed with disbelief about how long women can take in a single store.

As always, Jenna and I talked about the goings-on in our lives, how we’re doing with the Neuromyelitis Optica/NMO, and then made sarcastic remarks about everything else. It’s nice to hang out with people who get our illness but whom don’t make it the center of conversation. We may have NMO, but NMO doesn’t always need to have us.

Overall, I had a good experience in Canada (with the exception of some piss-pour service from Air Canada, but I’ll save that for another time). I’ll end this recap with a few notable observations which, I hope, you’ll find amusing more than anything.

What I learned about Canada, Canadians, and Toronto in 2016

  1. Bears are a common sighting during the fall season. Apparently they’re searching for food to fatten themselves up before winter hibernation.
  2. People who live in Toronto are called Torontonians. Despite what I, a Houstonian, might have thought, Torontonians do not eat poutin every day. In fact, they only ingest it late at night after many drinks.
  3. Torontonians really love their Blue Jays. Unfortunately, I was told Toronto now holds the record for North American city with the longest streak without any sports championships. (The former record holder was Cleveland, but the Cavaliers had changed that.)
  4. Three Canadian snacks you should try are ketchup chips, all dressed chips, and coffee crisps.
  5. Many Canadians are wary of Texans. (Believe me when I say not all Texans open-carry guns and support Trump.)
  6. Whenever they find out I’m American, almost every Canadian without fail brings up Trump. Please know I’d much rather talk about Netflix shows, dogs, and poutin.
  7. September is a great time to be in Toronto because the weather is amazing. Get your breezy, sunny days now before the harsh winter sets in.
  8. Toronto has great food. You can get fine dining, French, Caribbean, Japanese, Chinese, Spanish, and American all within a few city blocks.

Till next time, Canada…xoxo!

P.S. Here’s an interview I did with CBC Toronto’s Dwight Drummond about Four Senses.

Four Senses season 4 cast and crew

It takes a village to make a TV show.

My cooking show, Four Senses, is returning for a fourth season

Christine & Carl Four Senses 2 (Varner Productions Limited)

My co-host, Top Chef season 2 winner Carl Heinrich, and me in front of our Le Creuset adorned set

Next week, I’ll fly to Toronto, Canada, to begin production of season 4 of Four Senses, a cooking show geared towards the vision impaired and novice cook. The show airs on Accessible Media, Inc or AMI, but even if you aren’t Canadian and don’t get this channel, you can catch the show on AMI’s website, complete with a fully accessible media player.

If you asked me a couple of years ago if I’d ever thought I’d have a cooking show going for four seasons, I would’ve shrugged and said, “Who knows?” If you would’ve asked me five years ago if I thought I’d ever be on TV, I would’ve laughed in your face. It goes to show you just never know with life—both good and bad things happen to us during the course of our lifetimes, and all we can do is make the most of them.

Every season has gotten better and better, and I attribute it to more support; growing funding; and, perhaps most of all, a stronger and more experienced team of cast and crew. I think you’ll be able to tell the difference in caliber if you watch our first season versus our third and most recent.

I’m looking forward to yet another season. People often don’t realize how much hard work goes into producing a television series—one 30-minute episode takes at least four hours of filming (and that’s not including the out-of-studio field pieces we shoot on a different day, plus the hours of post-production editing). Being in the entertainment industry is not as glamorous as one may think, but I love what I do—it’s the best feeling to wrap a shoot and know that all the hard work everyone put in together will result in something great. It’s an exemplary example of how teamwork is essential to success.

I won’t get too much time off—we shoot our in-studio portions of the season seven days straight (which is how most television production schedules go)—but when I do have a little downtime, I’ll be vlogging and visiting with Jenna.

Canada, here I come!

06
Sep 2016
POSTED BY Christine
DISCUSSION No Comments
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