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← Meet the mom who started the Ice Bucket Challenge | Nancy Frates | TEDxBoston

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  1. Well, good afternoon.
  2. How many of you
  3. took the ALS Ice Bucket Challenge?
  4. (Applause)
  5. Woo hoo!
  6. Well, I have to tell you,
    from the bottom of our hearts,
  7. thank you so very, very much.
  8. Do you know to date the ALS Association
  9. has raised 125 million dollars?
  10. Woo hoo! (Applause)
  11. It takes me back to the summer of 2011.
  12. My family, my kids had all grown up.
  13. We were officially empty nesters,
  14. and we decided,
    let's go on a family vacation.
  15. Jenn, my daughter, and my son-in-law
  16. came down from New York.
  17. My youngest, Andrew,
  18. he came down from his home in Charlestown
  19. where he was working in Boston,
  20. and my son Pete,
  21. who had played at Boston College,
  22. had played baseball professionally
    in Europe,
  23. and had now come home and was selling
    group insurance, he also joined us.
  24. And one night, I found myself
  25. having a beer with Pete,
  26. and Pete was looking at me
    and he just said,
  27. "You know, Mom, I don't know,
  28. selling group insurance
    is just not my passion."
  29. He said, "I just don't feel
    I'm living up to my potential.
  30. I don't feel this is my mission in life."
  31. And he said, "You know,
    oh by the way, Mom,
  32. I have to leave early from vacation
  33. because my inter-city league team
    that I play for made the playoffs,
  34. and I have to get back to Boston
    because I can't let my team down.
  35. I'm just not as passionate about my job
  36. as I am about baseball."
  37. So off Pete went,
    and left the family vacation -
  38. break a mother's heart -
  39. and he went,
    and we followed four days later
  40. to see the next playoff game.
  41. We're at the playoff game,
    Pete's at the plate,
  42. and a fastball's coming in,
  43. and it hits him on the wrist.
  44. Oh, Pete.
  45. His wrist went completely limp, like this.
  46. So for the next six months,
  47. Pete went back to his home in Southie,
  48. kept working that unpassionate job,
  49. and was going to doctors
  50. to see what was wrong with this wrist
  51. that never came back.
  52. Six months later, in March,
  53. he called my husband and me, and he said,
  54. "Oh, Mom and Dad, we have a doctor
  55. that found a diagnosis for that wrist.
  56. Do you want to come
    with the doctor's appointment with me?"
  57. I said, "Sure, we'll come in."
  58. That morning, Pete, John and I
  59. all got up, got dressed, got in our cars -
  60. three separate cars
  61. because we were going to go to work
  62. after the doctor's appointment to find out
    what happened to the wrist.
  63. We walked into the neurologist's office,
    sat down,
  64. four doctors walk in,
  65. and the head neurologist sits down.
  66. And he says, "Well, Pete,
    we've been looking at all the tests,
  67. and I have to tell you,
    it's not a sprained wrist,
  68. it's not a broken wrist,
  69. it's not nerve damage in the wrist,
  70. it's not an infection,
  71. it's not Lyme disease."
  72. And there was this
    deliberate elimination going up,
  73. and I was thinking to myself,
  74. where is he going with this?
  75. Then he put his hands on his knees,
  76. he looked right at my 27-year-old kid,
    and said,
  77. "I don't know how to tell
    a 27-year-old this:
  78. Pete, you have ALS."
  79. ALS?
  80. I had had a friend
    whose 80-year-old father had ALS.
  81. I looked at my husband, he looked at me,
  82. and then we looked at the doctor,
    and we said, "ALS?
  83. Okay, what treatment? Let's go.
  84. What do we do? Let's go."
  85. And he looked at us, and he said,
    "Mr. and Mrs. Frates,
  86. I'm sorry to tell you this,
  87. but there's no treatment
    and there's no cure."
  88. We were the worst culprits.
  89. We didn't even understand
  90. that it had been 75 years since Lou Gehrig
  91. and nothing had been done
    in the progress against ALS.
  92. So we all went home, and Jenn and Dan
  93. flew home from Wall Street,
  94. Andrew came home from Charlestown,
  95. and Pete went to B.C. to pick up
  96. his then-girlfriend Julie
    and brought her home,
  97. and six hours later after diagnosis,
  98. we're sitting around
    having a family dinner,
  99. and we're having small chat.
  100. I don't even remember
    cooking dinner that night.
  101. But then our leader, Pete, set the vision,
  102. and talked to us
    just like we were his new team.
  103. He said,
    "There will be no wallowing, people."
  104. He goes, "We're not looking back,
  105. we're looking forward.
  106. What an amazing opportunity we have
    to change the world.
  107. I'm going to change the face
  108. of this unacceptable situation of ALS.
  109. We're going to move the needle,
  110. and I'm going to get it in front
    of philanthropists like Bill Gates."
  111. And that was it.
    We were given our directive.
  112. So in the days and months that followed,
  113. within a week,
    we had our brothers and sisters
  114. and our family come to us,
  115. that they were already creating
    Team Frate Train.
  116. Uncle Dave, he was the webmaster;
  117. Uncle Artie, he was the accountant;
  118. Auntie Dana, she was the graphic artist;
  119. and my youngest son, Andrew,
  120. quit his job, left his apartment
    in Charlestown
  121. and says, "I'm going to take care
    of Pete and be his caregiver."
  122. Then all those people,
    classmates, teammates,
  123. coworkers that Pete had inspired
  124. throughout his whole life,
  125. the circles of Pete all started
    intersecting with one another,
  126. and made Team Frate Train.
  127. Six months after diagnosis,
  128. Pete was given an award
    at a research summit for advocacy.
  129. He got up and gave a very eloquent speech,
  130. and at the end of the speech,
    there was a panel,
  131. and on the panel were these
    pharmaceutical executives
  132. and biochemists and clinicians
  133. and I'm sitting there
    and I'm listening to them
  134. and most of the content
    went straight over my head.
  135. I avoided every science class
    I ever could.
  136. But I was watching these people,
    and I was listening to them,
  137. and they were saying,
    "I, I do this, I do that,"
  138. and there was a real unfamiliarity
    between them.
  139. So at the end of their talk, the panel,
  140. they had questions and answers,
  141. and boom, my hand went right up,
  142. and I get the microphone,
  143. and I look at them and I say, "Thank you.
  144. Thank you so much for working in ALS.
  145. It means so very much to us."
  146. I said, "But I do have to tell you
  147. that I'm watching your body language
  148. and I'm listening to what you're saying.
  149. It just doesn't seem like there's a whole
    lot of collaboration going on here.
  150. And not only that, where's the flip chart
  151. with the action items and the follow-up
    and the accountability?
  152. What are you going to do
    after you leave this room?"
  153. And then I turned around
  154. and there was about 200 pairs of eyes
    just staring at me.
  155. And it was that point that I realized
  156. that I had talked about
    the elephant in the room.
  157. Thus my mission had begun.
  158. So over the next couple of years,
  159. Pete - we've had our highs and our lows.
  160. Pete was put on a compassionate use drug.
  161. It was hope in a bottle
    for the whole ALS community.
  162. It was in a phase III trial.
  163. Then six months later,
    the data comes back: no efficacy.
  164. We were supposed
    to have therapies overseas,
  165. and the rug was pulled out from under us.
  166. So for the next two years,
  167. we just watched my son
    be taken away from me,
  168. little by little every day.
  169. Two and a half years ago,
  170. Pete was hitting home runs
    at baseball fields.
  171. Today, Pete's completely paralyzed.
  172. He can't hold his head up any longer.
  173. He's confined to a motorized wheelchair.
  174. He can no longer swallow or eat.
  175. He has a feeding tube.
  176. He can't speak.
  177. He talks with eye gaze technology
  178. and a speech generating device,
  179. and we're watching his lungs,
  180. because his diaphragm
    eventually is going to give out
  181. and then the decision will be made
    to put him on a ventilator or not.
  182. ALS robs the human
    of all their physical parts,
  183. but the brain stays intact.
  184. So July 4th, 2014,
  185. 75th year of Lou Gehrig's
    inspirational speech comes,
  186. and Pete is asked by MLB.com to write
    an article in the Bleacher Report.
  187. And it was very significant, because
    he wrote it using his eye gaze technology.
  188. Twenty days later,
    the ice started to fall.
  189. On July 27th, Pete's roommate
    in New York City,
  190. wearing a Quinn For The Win shirt,
  191. signifying Pat Quinn, another ALS patient
    known in New York,
  192. and B.C. shorts
  193. said, "I'm taking the ALS
    Ice Bucket Challenge,"
  194. picked up the ice, put it over his head.
  195. "And I'm nominating ..."
    And he sent it up to Boston.
  196. And that was on July 27th.
  197. Over the next couple of days,
    our news feed
  198. was full of family and friends.
  199. If you haven't gone back,
    the nice thing about Facebook
  200. is that you have the dates,
    you can go back.
  201. You've got to see Uncle Artie's
    human Bloody Mary.
  202. I'm telling you,
    it's one of the best ones,
  203. and that was probably in day two.
  204. By about day four, Uncle Dave,
    the webmaster,
  205. he isn't on Facebook,
  206. and I get a text from him,
    and it says, "Nancy,
  207. what the hell is going on?"
  208. Uncle Dave gets a hit
    every time Pete's website
  209. is gone onto,
    and his phone was blowing up.
  210. So we all sat down and we realized,
  211. money is coming in - how amazing.
  212. So we knew awareness
    would lead to funding,
  213. we just didn't know it would
    only take a couple of days.
  214. So we got together, put our best
    501(c)(3)s on Pete's website,
  215. and off we went.
  216. So week one, Boston media.
  217. Week two, national media.
  218. It was during week two
    that our neighbor next door
  219. opened up our door and threw a pizza
  220. across the kitchen floor, saying,
  221. "I think you people
    might need food in there."
  222. (Laughter)
  223. Week three, celebrities -
    Entertainment Tonight,
  224. Access Hollywood.
  225. Week four, global -
    BBC, Irish Radio.
  226. Did anyone see "Lost In Translation"?
  227. My husband did Japanese television.
  228. It was interesting.
  229. (Laughter)
  230. And those videos, the popular ones.
  231. Paul Bissonnette's glacier video,
  232. How about the redemption nuns of Dublin?
  233. Who's seen that one?
  234. It's absolutely fantastic.
  235. J.T., Justin Timberlake.
  236. That's when we knew,
    that was a real A-list celebrity.
  237. I go back on my texts, and I can see
  238. "JT! JT!" My sister texting me.
  239. Angela Merkel, the chancellor of Germany.
  240. Incredible.
  241. And the ALS patients,
  242. you know what their favorite ones are,
    and their families'?
  243. All of them.
  244. Because this misunderstood
    and underfunded "rare" disease,
  245. they just sat and watched people
    saying it over and over: "ALS, ALS."
  246. It was unbelievable.
  247. And those naysayers,
  248. let's just talk a couple of stats,
    shall we?
  249. Okay, so the ALS Association,
  250. they think by year end,
    it'll be 160 million dollars.
  251. ALS TDI in Cambridge,
  252. they raised three million dollars.
  253. Well, guess what?
  254. They had a clinical trial for a drug
    that they've been developing.
  255. It was on a three-year track for funding.
  256. Two months.
  257. It's coming out starting in two months.
  258. (Applause)
  259. And YouTube has reported
  260. that over 150 countries have posted
    Ice Bucket Challenges for ALS.
  261. And Facebook, 2.5 million videos,
  262. and I had the awesome adventure
  263. visiting the Facebook campus last week,
  264. and I said to them, "I know
    what it was like in my house.
  265. I can't imagine what it was like
    around here."
  266. All she said was, "Jaw-dropping."
  267. And my family's favorite video?
  268. Bill Gates.
  269. Because the night Pete was diagnosed,
  270. he told us that he was going to get ALS
  271. in front of philanthropists
    like Bill Gates,
  272. and he did it.
  273. Goal number one, check.
  274. Now on to the treatment and cure.
  275. (Applause)
  276. So okay, after all of this ice,
  277. we know that it was much more
  278. than just pouring buckets of ice water
    over your head,
  279. and I really would like to leave you
  280. with a couple of things
    that I'd like you to remember.
  281. The first thing is,
  282. every morning when you wake up,
  283. you can choose to live your day
    in positivity.
  284. Would any of you blame me
  285. if I just was in the fetal position
  286. and pulled the covers over my head
    every day?
  287. No, I don't think anybody would blame me,
  288. but Pete has inspired us to wake up
  289. every morning
    and be positive and proactive.
  290. I actually had to ditch support groups
  291. because everybody was in there saying
  292. that spraying their lawns with chemicals,
  293. that's why they got ALS,
  294. and I was like, "I don't think so,"
  295. but I had to get away from the negativity.
  296. The second thing I want to leave you with
  297. is the person at the middle
    of the challenge
  298. has to be willing to have
    the mental toughness
  299. to put themselves out there.
  300. Pete still goes to baseball games
  301. and he still sits with his teammates
    in the dugout,
  302. and he hangs his gravity feed bag
  303. right on the cages.
  304. You'll see the kids,
    they're up there hanging it up.
  305. "Pete, is that okay?" "Yup."
  306. And then they put it
    right into his stomach.
  307. Because he wants them to see
    what the reality of this is,
  308. and how he's never,
    ever going to give up.
  309. And the third thing
    I want to leave you with:
  310. If you ever come across a situation
  311. that you see as so unacceptable,
  312. I want you to dig down as deep as you can
  313. and find your best mother bear
  314. and go after it.
  315. (Applause)
  316. Thank you.
  317. (Applause ends)
  318. I know that I'm running over,
  319. but I've got to leave you with this:
  320. the gifts that my son has given me.
  321. I have had 29 years
  322. of having the honor of being the mother
  323. of Pete Frates.
  324. Pete Frates has been inspiring
    and leading his whole life.
  325. He's thrown out kindness,
  326. and all that kindness
    has come back to him.
  327. He walks the face of the Earth
    right now and knows why he's here.
  328. What a gift.
  329. The second thing that my son has given me
  330. is he's given me my mission in life.
  331. Now I know why I'm here.
  332. I'm going to save my son,
  333. and if it doesn't happen in time for him,
  334. I'm going to work so that no other mother
  335. has to go through what I'm going through.
  336. And the third thing,
    and last but not least
  337. gift that my son has given me,
  338. as an exclamation point
  339. to the miraculous month
  340. of August 2014:
  341. That girlfriend that he went to get
    on the night of diagnosis is now his wife,
  342. and Pete and Julie have given me
    my granddaughter, Lucy Fitzgerald Frates.
  343. Lucy Fitzgerald Frates
    came two weeks early
  344. as the exclamation point
  345. on August 31st, 2014.
  346. And so -
  347. (Applause) -
  348. And so let me leave you
    with Pete's words of inspiration
  349. that he would use to classmates,
    coworkers and teammates.
  350. Be passionate.
  351. Be genuine.
  352. Be hardworking.
  353. And don't forget to be great.
  354. Thank you. (Applause)