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NMO Development Ambassadors – 2018 NMO Patient Day

Victoria:

We have had many great successes and we’ve had this incredible journey we’ve been on, but as you know there’s the sadness and the losses as well. Well, this was a video that was hard to do, and this is one that we all need to watch. Because this is a tribute to a beautiful young woman who was here last year. I spoke to her mom and dad, and let’s just put it on. This is her favorite song, and let’s watch. Olivia Lenu. That was really hard. There’s a lot, not a lot, actually I’m glad there’s not a lot, but too many, one is too many, of leaves on our tree there written in white ink of people that we’ve lost.

Victoria:

I do work as hard as I do to not have to do those videos. I know that her mom and her dad are probably watching now on Facebook Live. Catlin and Phillipe I know that you know that everybody in this room’s heart is with you, and Olivia we’re with you, and we all are going to keep doing what we’re doing. Hard transition to make, but we keep moving forward because that’s what we do. I want to bring up Derrick and Heather Sowalla. They’re going to talk about and acknowledge some other NMO development ambassadors. Why don’t you guys come on up and then I’ll be back.

Heather Sowalla:

We’re all a little emotional, so don’t mind if I start to cry. They wanted me to talk a little bit about Olivia and it’s really amazing that I get to do that for all of you. Most of us got to experience her whether it was here at Patient Day or online. She was just amazing. The first time I met Olivia was in 2016. She traveled all the way from Belgium, which we all know that. She came here to be surrounded by everybody that has NMO. We’re just such a huge family, and to have that support. It was the first year that we did the teen and young adult support group. She walked into that room, and the first thing I thought was, “Oh my God, she’s an Amazon. She’s tall. She’s beautiful.” It was just amazing how she lit up the room, because she did. She lit it up.

Heather Sowalla:

Over that year I really came to know her and she quickly became really close friends. I know she was close with everybody in the NMO community. She was always the first one to reach out and offer support and love. We all love her so much for that. She encouraged us all and was always quick to offer courage and hope. I was looking back through some of my messages that we had when we talked about coming up here and doing this. The one time I was having a relapse and she sent me this message, and I wanted to share it with everybody. She said, “No matter where you are in life or how sick you become, no matter how bleak the future may look, this is not your end.” It’s true. It’s not our end, and it’s not her end. She would want us to be happy and she would want us to fight.

Heather Sowalla:

I know that the loss hit us all hard, and that in this moment it seems so unbearable with just everybody that we’ve lost, because we’ve lost a lot. Like Victoria said, all the names are over there. One’s too many. But she would want us to use the pain and the grief, and she would want us to reach out. This is not the end of Olivia’s story. It may have been the final chapter of her life here with us, but this is not the end of her story, because she will continue to live on in all of our hearts and minds. She would want us to fight with everything that we can, and I know that we can do that together. I just want to thank her for everything that she did and everything she will continue to do and she will live on in our hearts forever. I love you all.

Derrick:

As Heather said, she’s come here twice and just last year she came to me and she said, “I have this idea. I want to do a tournament or a basketball or event to raise NMO research dollars.” I said, “Okay, sounds good.” Actually, I said, “Okay,” because she was way taller than me. Time went on and her teammates in the tournament and the basketball team, they knew how much it meant to her, so they followed through with what she started. They had the basketball tournament in December of 2017. Just a little bit about Olivia, she played basketball. This girl balled okay, she was a baller and a model as well. She was on the first national division and got selected several times for the Belgium national team. Her teammates knew what this meant, and they said, “We are going to do this for Olivia.” 200 basketball players were on her favorite court in Belgium, and I actually see the t-shirts there.

Derrick:

Heather made those t-shirts that her mother and father are wearing in those photos. It was pretty widely covered by the Belgium media news outlets, social media. A lot of stories that was what the clip you saw in the video. It was a WNBA player from the Washington Mystics named Emma Meesseman. She was there and Olivia and her used to play basketball together. She donated a jersey and all tolled it was about 700 people there. They wanted to raise 15,000 Euro, and they ended up raising 25,000 Euro, which is about 30,000 US dollars for that one day. Thank you Olivia’s teammates, her mother and father. If you’re on our Facebook Live, we love you and it’s amazing what you guys are doing over there. There is talk that maybe there’ll be another tournament next year, I don’t know, but we’ll keep you posted.

Derrick:

Olivia was also on TV. She was participating in a TV show. That show looks like it’s going to air, and she as able to tell her story, and I’m told it’s going to air in April. We’ll keep you posted, we’re trying to find out where, I mean when, what channels. Might be in Belgium so good luck. But as Heather mentioned, we do have names. That’s the message board. Messages of hope, but also you might’ve noticed the leaves also include names and those are of the ones we’ve lost. We did the best that we could to fill in the names. But please, when you have time, go write a name If you know it if it’s not there, and post it on the board, please. Because this is for everyone. We’ve never done anything like this before, but it just it’s time, and like Ms. Jackson said, “We keep moving on and we remember and we don’t forget. We make it meaningful.” Thank you.

Derrick:

Moving on. Now I’d like to introduce four people who are here, but six people total, two people couldn’t be here. These are what we call NMO development ambassadors. These are people who came to us and they raised their hand they said, long ago, years ago, and they said, “We want to raise money for NMO research.” We said, “Okay yes, we will help you.” I’m going to call them up. We’d like to recognize them and just thank them for all the hard work they’ve done. We’ll start with [Craig Kline 00:12:55] please come to the stage, and Fiona, that’s his baby is Fiona. Thanks. Next is a Gabriela Romano. Thank you. Next is Joanna Steel. Accepting for Joanna is her dear friend, Maria Laredo. Joanna wishes she could be here, she was scheduled, but things just changed she couldn’t come, so Maria is going to accept the award for her.

Maria Laredo:

Thank you. I’m so happy for her. Thank you so much.

Derrick:

And Michelle Dean.

Michelle Dean:

Thanks.

Derrick:

Mm-hmm.

Michelle Dean:

Thank you.

Derrick:

No, thank you. The ones who are not here are Nick and Amy Adams from San Diego. They wish they could be here. They had a conflict of schedule, but they’re just very thrilled and thankful, and Nancy [Reimer 00:14:38] of course. She wishes she could be here, but again, another schedule conflict. Now, the new people in the room, you don’t know these people, but they’ve been working for NMO for years. That’s what this is about. These people here on stage have been working for NMO for NMO research, raising funding dollars, and all tolled they have cumulatively raised $420,000. Let’s give it up. Let’s give it up for the NMO ambassadors. Thank you. Thank you. Thanks. Thank you again. Thank you.

Maria Laredo:

I’m not going to jump.

Derrick:

No don’t jump okay. Jesus has got it he’s got it.

Audience:

Good job Jesus.

Derrick:

We’re going to talk about a little bit of what else is going on with NMO. What are people doing out there along with these ambassadors, development ambassadors? These are six people who’ve raised over $400,000, six people. It’s amazing to think about what one person can do, what an individual can do when they just try and say, “I’m going to keep trying and keep trying.” They’ve been rejected. They go, they hear no, and then they go move on until they hear yes. Again, it’s just amazing what they do. For example, what other things that are going on and have been happening is Facebook now has donate create fundraiser section. People have been creating birthday fundraisers on our Facebook page. Instead of a gift, I want you to give money to Guthy-Jackson for NMO research. There’s been over 40 of them so far, just between in one year. Just over 40 Facebook fundraisers for their birthdays has raised $20,000.

Derrick:

There’s about 200 people in this room. There’s 40, about 40 people who did that. 200 are in this room right now. If we all did that simple go online post, just request people just donate for NMO research. That could be $100,000 if my math is correct, I guess. It could be a lot of money. Other things that are going on as Ms. Jackson said earlier, the first ever NMO Australian Patient Day occurred. They reached out to us, let us know that it was going on. We helped them promote the event. We’re all connected. None of this ever was going on before, and it’s just this explosion of things that are going on. To recognize Danielle Americano, she went to her Brazilian Congress, and she was meeting with state legislators and lawmakers to try to get a NMO awareness day passed. That bill is still being reviewed I believe Danielle right? Yeah. It’s under review still.

Derrick:

Christine Hà, who knows Christine Hà? The blind cook MasterChef. She’s out there, it’s amazing what she’s doing. She gave us a little update. She was going to be here today, but she was invited to Qatar. She’s cooking at the ninth annual Qatar International Food Festival right now. She wishes she could be here she says hello. That’s what she’s doing now. Next month she’s going to be a speaker at the TEDxOccidentalCollege in LA. She’s going to be a keynote speaker for the Asian/Pacific American Heritage Month in Columbia at Columbia University actually in March in New York. She’s working on a second cookbook, and she’s going to be a producer for a documentary about how blind and low vision people navigate the dating world, and it’s called love is blind.

Derrick:

It’s perfect. Come on it’s pretty catchy. Look her up. Look her up on the blindcook.com check her out. We post things of what she’s doing when she tells us what she’s doing. We also share that. Jody Armenio, she was going to be here again today she couldn’t make it. But on Rare Disease Day February 28th, she went and met with Georgia’s Capitol state legislators. She brought the power book and she shared with them NMO, what’s going on. She said that you got to read this book. Tammy Freeman and Katie they’re here today somewhere. Where are you guys? Yes, thank you. They just did a Hogwarts Homecoming. They participated in Michigan and it was event and they said, “We need some resources.” We sent them a banner and literature. They raised the money for NMO. That was two weeks ago, so thank you.

Derrick:

Anyone know Niamh Woodlake? Niamh in the UK. This is a little older news, but in 2016 she won the BBC Teen Choice Award or Teen Hero Award, and she met with Kate Middleton and Prince William. Now, again, some people know this some people don’t, because the newer people they’re just catching on, get a lot of emails. I just got diagnosed, what is this? You’re catching up. She has a blog. She has a Facebook group actually. Check her out. All these are linked on our website. Sumaira Foundation they are having their gala March 24th in Boston. They also do Voices of NMO, that’s online stories and podcasts. Gabriela I believe has a podcast coming up. Heather is on the post for her story. Danielle Americano is, Dionne Cooper is.

Derrick:

All these people who are in this room, they’re all participating in these ways. Lillian Taun I think you’re here. A couple other people. There’s also the Wadi Rum Ultra. Did anybody hear about this woman? This woman had a friend who had NMO. She said, “I’m going to run a marathon. No, I’m going to run five marathons and it’s going to be in the desert.” She ran five marathons in a row for NMO research. I’m not sure how much she raised, but it was 162 miles in five days that she ran in the Jordanian desert. One person can really just that’s the power of rare. That is it, it’s all I know how to phrase it as. There are support groups, a new support group just started in Houston. Heather runs a support group. How many? They had a support group meeting yesterday, two and a half hours long?

Heather Sowalla:

Yeah, I think it was about two and a half hours long. I forget how many teens were actually in the room. We only had a couple seats that were empty. Last year we had four. It’s amazing how many young people came together, and there’s so many other support groups too. The men’s group and all the other ones. It’s just amazing. We’re out there and we’re talking to each other. It’s amazing.

Derrick:

They’re online and they’re call-in and they’re also in-person. That’s on our website too. Heather Shepherd she’s an NMO patient who has a radio show. She talks about NMO in Pennsylvania I believe. Is it?

Heather Sowalla:

I don’t think it’s Pennsylvania, I forget which one

Derrick:

We linked to her though. Tanisha Willis. She’s in Washington, DC she plans to host a walk-run in Washington, DC this summer. Dionne Cooper and Arthur Lee. You guys are here. Where are you? You’re somewhere. There you are. You guys want to do a walk-run in New Orleans. Joanna Steel, she’s planning another raffle fundraiser. Then the NMO UK for Vanessa. There’s a patient meeting April 13th and 14th. Those are some things that are going on in NMO. Then also there is a proposed bill. It’s called bill HR 326. Has anyone heard of that? Raise your hands high I can’t see. Yes. Okay. Some of you have some of you haven’t. We post on this all the time. Signatures, we need signatures, they’re online signatures. What it is, is Barbara Lee she’s a representative, a democratic representative.

Derrick:

She introduced a bill in January. It would create a national NMO consortium, to provide NMO research grants and assemble a panel of experts to provide ongoing guidance and recommendations for NMO research for the consortium. Cindy Fincham started the petition and we really need signatures. She needs signatures. NMO research needs signatures. It’s as simple as clicking. The signature is online and you click and you have signed it’s that simple. Tell everybody you know. It is the easiest thing to do. Then [Adeli 00:23:50] Vasquez. She is new too today. We just met. She’s just meeting everyone. Adeli where are you? You’re here, there you’re in the back. She walked up to me earlier today, and she said, “You know my mom and I… Oh by the way, my mother is the Consulate General of the Dominican Republic based in Boston. They plan to meet with the president and the first lady of the Dominican Republic. Can we have some literature? Can you help us make this happen?”

Derrick:

Yes, we can make that happen. We will make that happen. Everyone’s doing something. We really have big targets coming up that we are raising funds absolutely. Thank you. But we have to keep it going. It’s being able to take the no answer. It’s being able to get up and go again and not just one, “Hey yeah we did the one thing, yes.” No it’s again and again. I can just show you really quick on our website that we have a section where you can create your own online fundraiser. The t-shirt is Heather’s, and in the middle was a coach, a basketball team created an online fundraiser. They use this page.

Derrick:

They create their own fundraiser, they can track everyone who donated. They send their own link to all their friends, and it tracks how much has their campaign raised. On the right raising awareness for NMO that’s another one. We have here a tool that you can use, you log in, you create your own page and we’ll help promote it for you. The tools are there. In the middle Peyton, coincidentally it was another basketball player and the team rallied around her. These are the types of things that we could all do. 200 people in this room right now, we could all get up from here and go continue to carry this forward. With that, Heather has one last thing, and then we’re done, I promise. If you would please Heather.

Heather Sowalla:

All right. We all did this last year so we’re going to do it again. Gabrielle and I last year we did the NMO awareness month, March. NMO awareness month, we reached out, people contacted the governors of their states, and we tried to get them to agree to sign a proclamation saying that March was NMO awareness month. We got around 38 states this year. It wasn’t as many as last year. We had a little bit of a rough time. But next year I would really love everybody to work together. Gabrielle and I are going to actually get together, and we’re going to talk about how we can get it out and get more people involved. Earlier in the day something that they said light the torch. Really that’s what we need to do.

Heather Sowalla:

We need to light the torch and keep it burning. Because the more we can raise awareness, we have these proclamations. We can get them to the senators, the House. Maybe we can get it in front of Congress and maybe we can get more disease awareness, more funds for NMO research. That’s what we really need. You can all do that and reach out to me and Gabrielle will help you. Where are you Gabrielle? She’s back there. We’re here to help you and we could do it. But the last thing I want to do, and I swear, this is the last thing, I would like to give the proclamations that I have to Ms. Jackson and the family and everybody for everything they did, because without them where would we be?

Derrick:

Thank you.

 

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