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Closing Remarks – 2018 NMO Patient Day


We began the day thinking about everything that has been done that could be done, and it brings us to where we are now, another year in front of us, ready to be tackled in a way that we go even further and with greater ambition and greater success. And I’m standing and I am applauding Victoria, Bill, the family, the foundation. And I’d like you to join me in thanking Victoria and Bill.


Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you, thank you. Thank you so much. It’s honestly been the greatest honor of my life, the most unexpected from somebody who used to make lip gloss once upon a time in my last life. It has been the greatest honor of my life and will continue to be. And I can tell you, this last year was extraordinary for me. I was inducted into the National Women’s Hall of Fame. Thank you. Thank you. Aw, thanks.


I say that because, even when I was thanking everybody, it’s tricky because you’re being acknowledged for something that you’re glad that you’re able to do at the same time, because my daughter also has NMO. But standing up there, I just pictured everybody in this room, and as I’ve said many times, and as I will when Michael and I are, and people know I hate to fly, but all of you will be my wings to get me to Rome, and we’ll be meeting with Vice President Biden because he’s interested in hearing now about The Power of Rare and the work that they’re doing in the world of cancer research, saying, “Well, how did you guys do this and how can we work together?” So that’s going to be pretty extraordinary.


There are so many people that I also have to thank in my foundation, and I really want to thank Dr. Michael Yeaman. He’s amazing. A very humble man. People behind the scenes that you don’t know that are in a lot of our advisors that I just want to acknowledge them. Terry Balasky, Terry Smith, Jacinta Benny, who you do know, who has been with me since the beginning and maybe quiet in this room, but definitely her voice is heard when we all walk out the door and she keeps it all together. Judy, who is new to our team, but makes sure that everything, all these… You’ve known for years when you’ve gone in and you’ve done all your blood draws, we have our own biorepository and data collection center, and somebody has to keep charge and make sure that all those specimens are exactly perfect. And that’s what she does. And I’m grateful.


You all know Dan Benne, who has been doing just an amazing job helping keep things together. And Derek, I know all of you talk to Derek all the time. Megan, behind the scene. She’s the one who’s getting the calls from Korea and Russia and Thailand and all over the world and is putting together crazy meetings and conferences. Renee Rodriguez, who assists and really is just amazing in putting all that together. Lisa McDaniel, who has been with us from the beginning. Lisa. Obviously the most painful of losses, her son, Colin. And she has been extraordinary and there for so many patients and we’re so grateful. Eric is new to our team, and again, he assists and helps in all the behind the scenes work. Just so many of the volunteers that are here today. I want to thank Matthew Howe and his team, David Tapan and Keith Paulson, Maverick Martinez, Maia Benson, Kyle Hamlin.


There are people in my offices who pay all these grants. These are the people I never mention, but it’s not just me that does all this. As we all know, everything takes a village. Jeremy and Anna who oversee and look at all the different grants that we’re paying. And then my personal little team, my emotional support team, Carl Perkins, who you all know, in the back who’s with me, Rachel St. Rose, my assistant who sees me in the good moments and in the not so good moments and helps keep it all together. Michael Cassidy, Mallood, my daughter, Allie, for always being my guiding light, my entire family, my husband. And I have two beautiful young men, my boys, Evan and Jackson, who are my guiding lights and now my new grandkids.


I promised, we are going to leave this happy. So we’re literally going to play something that’s happy. And I want to, in a second when we crank that up, I want you to see if you see yourself. And we’re going to then take a group photo, everybody like we do every year, because I treasure those. And I cannot wait to see you the next time. I really want to acknowledge every single one of you at every table as an ambassador. As I’ve said, and you know, our pockets have been deep, but they’re not bottomless. We need the help. We need the support in whichever way that you can help and support. It is grateful. We will be grateful and it really is making your voices heard and known and your stories told. That’s how it works. That’s how people are going to look back at this and go, “Wow, the little foundation and the little disease that could, would, will, and did.” And with that, can we please get happy and crank it up? Thank you. (music)


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