[Script Info]
Title: 
[Events]
Format: Layer, Start, End, Style, Name, MarginL, MarginR, MarginV, Effect, Text
Dialogue: 0,0:00:00.44,0:00:03.58,Default,,0000,0000,0000,,The best Christmas my children ever had
Dialogue: 0,0:00:03.60,0:00:06.92,Default,,0000,0000,0000,,was also the worst Christmas\Nmy husband and I ever had.
Dialogue: 0,0:00:07.80,0:00:09.62,Default,,0000,0000,0000,,Elizabeth, age seven,
Dialogue: 0,0:00:09.64,0:00:12.50,Default,,0000,0000,0000,,and her brother, Ian, age five,
Dialogue: 0,0:00:12.52,0:00:16.24,Default,,0000,0000,0000,,couldn't imagine why they were getting\Neverything they wanted for Christmas.
Dialogue: 0,0:00:17.24,0:00:19.96,Default,,0000,0000,0000,,The reason Santa was so generous
Dialogue: 0,0:00:20.76,0:00:24.02,Default,,0000,0000,0000,,was because of something\Nmy husband Pat and I knew
Dialogue: 0,0:00:24.04,0:00:25.88,Default,,0000,0000,0000,,and the kids couldn't comprehend.
Dialogue: 0,0:00:26.44,0:00:29.60,Default,,0000,0000,0000,,Something that we had just learned,\Nand it terrified us.
Dialogue: 0,0:00:31.56,0:00:33.82,Default,,0000,0000,0000,,This was 1994
Dialogue: 0,0:00:33.84,0:00:36.20,Default,,0000,0000,0000,,and the story actually starts\Na few years earlier.
Dialogue: 0,0:00:36.80,0:00:41.60,Default,,0000,0000,0000,,For a couple of years I had noticed\Na rash on the sides of Elizabeth's neck
Dialogue: 0,0:00:42.40,0:00:43.88,Default,,0000,0000,0000,,that looked like prickly heat.
Dialogue: 0,0:00:44.96,0:00:48.84,Default,,0000,0000,0000,,For those same years,\Nmy father and brother both died of cancer,
Dialogue: 0,0:00:49.60,0:00:52.28,Default,,0000,0000,0000,,and I was probably\Noveranxious about illness.
Dialogue: 0,0:00:53.12,0:00:55.90,Default,,0000,0000,0000,,The doctors assured us\Nthere was nothing wrong
Dialogue: 0,0:00:55.92,0:00:57.66,Default,,0000,0000,0000,,and I shouldn't worry,
Dialogue: 0,0:00:57.68,0:00:59.08,Default,,0000,0000,0000,,but I wasn't so sure.
Dialogue: 0,0:01:00.20,0:01:03.30,Default,,0000,0000,0000,,And so without a referral,\Nand paying out-of-pocket,
Dialogue: 0,0:01:03.32,0:01:05.52,Default,,0000,0000,0000,,I took Elizabeth to a dermatologist.
Dialogue: 0,0:01:06.56,0:01:08.90,Default,,0000,0000,0000,,She was probably\Njust allergic to something,
Dialogue: 0,0:01:08.92,0:01:13.32,Default,,0000,0000,0000,,but why did it appear\Njust on the sides of her neck, this rash?
Dialogue: 0,0:01:14.84,0:01:16.78,Default,,0000,0000,0000,,So it's two days before Christmas,
Dialogue: 0,0:01:16.80,0:01:18.00,Default,,0000,0000,0000,,1994,
Dialogue: 0,0:01:19.20,0:01:22.58,Default,,0000,0000,0000,,and the dermatologist\Ntakes a quick look at her neck and says,
Dialogue: 0,0:01:22.60,0:01:24.64,Default,,0000,0000,0000,,"She has pseudoxanthoma elasticum."
Dialogue: 0,0:01:25.64,0:01:29.24,Default,,0000,0000,0000,,And then he shuts off the lights\Nand looks in her eyes.
Dialogue: 0,0:01:30.32,0:01:31.98,Default,,0000,0000,0000,,It turns out, by chance,
Dialogue: 0,0:01:32.00,0:01:35.12,Default,,0000,0000,0000,,this dermatologist\Nalso trained in ophthalmology.
Dialogue: 0,0:01:36.08,0:01:37.28,Default,,0000,0000,0000,,Our lucky day.
Dialogue: 0,0:01:39.40,0:01:41.16,Default,,0000,0000,0000,,I am sick to my stomach.
Dialogue: 0,0:01:41.64,0:01:42.90,Default,,0000,0000,0000,,"Oma?"
Dialogue: 0,0:01:42.92,0:01:45.82,Default,,0000,0000,0000,,Oma's like melanoma, lymphoma --
Dialogue: 0,0:01:45.84,0:01:47.04,Default,,0000,0000,0000,,cancer.
Dialogue: 0,0:01:47.84,0:01:51.58,Default,,0000,0000,0000,,"Why are you looking\Nin her eyes for a skin rash?"
Dialogue: 0,0:01:51.60,0:01:53.68,Default,,0000,0000,0000,,I scream and make no sound.
Dialogue: 0,0:01:54.72,0:01:55.92,Default,,0000,0000,0000,,So there it is.
Dialogue: 0,0:01:56.80,0:02:00.36,Default,,0000,0000,0000,,Elizabeth has pseudoxanthoma elasticum,
Dialogue: 0,0:02:01.44,0:02:03.00,Default,,0000,0000,0000,,PXE for short.
Dialogue: 0,0:02:04.88,0:02:07.18,Default,,0000,0000,0000,,Questions mix with fear
Dialogue: 0,0:02:07.20,0:02:09.40,Default,,0000,0000,0000,,and erupt like bile in my throat.
Dialogue: 0,0:02:09.92,0:02:11.64,Default,,0000,0000,0000,,Why are you looking in her eyes?
Dialogue: 0,0:02:12.84,0:02:15.82,Default,,0000,0000,0000,,What do you know about this?\NHow do you know for sure?
Dialogue: 0,0:02:15.84,0:02:17.32,Default,,0000,0000,0000,,What is the prognosis?
Dialogue: 0,0:02:18.20,0:02:21.92,Default,,0000,0000,0000,,My training in pastoral counseling\Ndid not prepare me for this.
Dialogue: 0,0:02:23.68,0:02:27.56,Default,,0000,0000,0000,,Dr. Bercovitch tells us\Neverything he knows about PXE.
Dialogue: 0,0:02:28.84,0:02:30.60,Default,,0000,0000,0000,,It's a rare genetic disorder,
Dialogue: 0,0:02:31.80,0:02:33.00,Default,,0000,0000,0000,,it's systemic,
Dialogue: 0,0:02:34.04,0:02:37.96,Default,,0000,0000,0000,,it's a slowly progressing,\Npremature aging disease.
Dialogue: 0,0:02:38.84,0:02:42.40,Default,,0000,0000,0000,,It causes loose wrinkly skin\Nin the flexor areas.
Dialogue: 0,0:02:43.60,0:02:45.54,Default,,0000,0000,0000,,It causes legal blindness,
Dialogue: 0,0:02:45.56,0:02:47.28,Default,,0000,0000,0000,,like macular degeneration,
Dialogue: 0,0:02:47.96,0:02:50.68,Default,,0000,0000,0000,,and a host of cardiovascular problems.
Dialogue: 0,0:02:51.68,0:02:53.76,Default,,0000,0000,0000,,Little is known about this disease,
Dialogue: 0,0:02:54.60,0:02:57.42,Default,,0000,0000,0000,,and some people die in their 30s,
Dialogue: 0,0:02:57.44,0:02:59.92,Default,,0000,0000,0000,,say some of the reports at the time.
Dialogue: 0,0:03:01.44,0:03:04.24,Default,,0000,0000,0000,,He then just glances at our son and says,
Dialogue: 0,0:03:06.12,0:03:07.32,Default,,0000,0000,0000,,"He has it, too."
Dialogue: 0,0:03:09.40,0:03:14.24,Default,,0000,0000,0000,,We want to flee\Nback to the land of normal.
Dialogue: 0,0:03:18.92,0:03:20.34,Default,,0000,0000,0000,,Two days after Christmas,
Dialogue: 0,0:03:20.36,0:03:23.38,Default,,0000,0000,0000,,researchers come\Nfrom a university in Boston,
Dialogue: 0,0:03:23.40,0:03:25.90,Default,,0000,0000,0000,,and they take blood\Nfrom us and our children
Dialogue: 0,0:03:25.92,0:03:28.56,Default,,0000,0000,0000,,for a research project\Nfocused on finding the gene.
Dialogue: 0,0:03:29.36,0:03:30.74,Default,,0000,0000,0000,,A few days later,
Dialogue: 0,0:03:30.76,0:03:33.18,Default,,0000,0000,0000,,researchers come\Nfrom a medical center in New York
Dialogue: 0,0:03:33.20,0:03:34.72,Default,,0000,0000,0000,,and say they want blood, too.
Dialogue: 0,0:03:35.52,0:03:36.92,Default,,0000,0000,0000,,"These are children.
Dialogue: 0,0:03:37.56,0:03:39.66,Default,,0000,0000,0000,,They're five and seven years old.
Dialogue: 0,0:03:39.68,0:03:41.68,Default,,0000,0000,0000,,Don't make them face the needle twice.
Dialogue: 0,0:03:42.36,0:03:45.40,Default,,0000,0000,0000,,Go and get your share\Nfrom the other researchers."
Dialogue: 0,0:03:46.44,0:03:48.66,Default,,0000,0000,0000,,They laugh, incredulous.
Dialogue: 0,0:03:48.68,0:03:49.88,Default,,0000,0000,0000,,"Share?"
Dialogue: 0,0:03:51.20,0:03:55.60,Default,,0000,0000,0000,,It is then that we learn that there\Nis little sharing in biomedical research.
Dialogue: 0,0:03:56.52,0:03:59.22,Default,,0000,0000,0000,,This moment, more than any other,
Dialogue: 0,0:03:59.24,0:04:01.88,Default,,0000,0000,0000,,lit a fire beneath my husband Pat and me.
Dialogue: 0,0:04:03.64,0:04:05.82,Default,,0000,0000,0000,,Pat and I went to a medical school library
Dialogue: 0,0:04:05.84,0:04:08.80,Default,,0000,0000,0000,,and we copied every article\Nwe could find on PXE.
Dialogue: 0,0:04:09.72,0:04:11.68,Default,,0000,0000,0000,,We didn't understand a thing.
Dialogue: 0,0:04:12.84,0:04:15.58,Default,,0000,0000,0000,,We bought medical dictionaries\Nand scientific textbooks
Dialogue: 0,0:04:15.60,0:04:17.74,Default,,0000,0000,0000,,and read everything\Nwe could get our hands on.
Dialogue: 0,0:04:18.56,0:04:20.42,Default,,0000,0000,0000,,And though we still didn't understand,
Dialogue: 0,0:04:20.44,0:04:22.30,Default,,0000,0000,0000,,we could see patterns,
Dialogue: 0,0:04:22.32,0:04:25.70,Default,,0000,0000,0000,,and it became quickly\Napparent within a month
Dialogue: 0,0:04:25.72,0:04:29.68,Default,,0000,0000,0000,,that there was no systematic effort\Nto understand PXE.
Dialogue: 0,0:04:31.00,0:04:32.22,Default,,0000,0000,0000,,In addition,
Dialogue: 0,0:04:32.24,0:04:35.48,Default,,0000,0000,0000,,the lack of sharing\Nthat we experienced was pervasive.
Dialogue: 0,0:04:36.48,0:04:38.76,Default,,0000,0000,0000,,Researchers competed with each other
Dialogue: 0,0:04:39.64,0:04:43.68,Default,,0000,0000,0000,,because the ecosystem\Nwas designed to reward competition
Dialogue: 0,0:04:44.56,0:04:46.52,Default,,0000,0000,0000,,rather than to alleviate suffering.
Dialogue: 0,0:04:47.84,0:04:52.86,Default,,0000,0000,0000,,We realized that we would have to do\Nwork on this condition ourselves
Dialogue: 0,0:04:52.88,0:04:56.40,Default,,0000,0000,0000,,to find solutions\Nfor ourselves and others like us.
Dialogue: 0,0:04:57.56,0:04:59.90,Default,,0000,0000,0000,,But we faced two major barriers.
Dialogue: 0,0:04:59.92,0:05:01.42,Default,,0000,0000,0000,,The first one:
Dialogue: 0,0:05:01.44,0:05:03.80,Default,,0000,0000,0000,,Pat and I have no science background.
Dialogue: 0,0:05:04.92,0:05:08.34,Default,,0000,0000,0000,,At the time, he's the manager\Nof a construction company,
Dialogue: 0,0:05:08.36,0:05:12.22,Default,,0000,0000,0000,,and I'm a former college chaplain\Nstay-at-home mom --
Dialogue: 0,0:05:12.24,0:05:15.88,Default,,0000,0000,0000,,hardly the backgrounds\Nto take the research world by storm.
Dialogue: 0,0:05:17.48,0:05:19.16,Default,,0000,0000,0000,,The second barrier:
Dialogue: 0,0:05:20.36,0:05:21.84,Default,,0000,0000,0000,,researchers don't share.
Dialogue: 0,0:05:23.00,0:05:25.52,Default,,0000,0000,0000,,People told us you can't herd cats.
Dialogue: 0,0:05:26.64,0:05:30.18,Default,,0000,0000,0000,,Well, yes you can if you move their food.
Dialogue: 0,0:05:30.20,0:05:32.24,Default,,0000,0000,0000,,(Laughter)
Dialogue: 0,0:05:33.40,0:05:36.96,Default,,0000,0000,0000,,(Applause)
Dialogue: 0,0:05:37.40,0:05:40.40,Default,,0000,0000,0000,,DNA and clinical data is the food.
Dialogue: 0,0:05:40.96,0:05:44.10,Default,,0000,0000,0000,,So we would collect blood\Nand medical histories,
Dialogue: 0,0:05:44.12,0:05:47.70,Default,,0000,0000,0000,,and require that all scientists\Nusing these resources
Dialogue: 0,0:05:47.72,0:05:51.40,Default,,0000,0000,0000,,would share results with each other\Nand with the people who donated.
Dialogue: 0,0:05:53.08,0:05:55.30,Default,,0000,0000,0000,,Well before the internet\Nwas in common use,
Dialogue: 0,0:05:55.32,0:05:58.18,Default,,0000,0000,0000,,Pat and I established PXE International,
Dialogue: 0,0:05:58.20,0:06:03.10,Default,,0000,0000,0000,,a nonprofit dedicated to initiating\Nresearch and conducting it on PXE
Dialogue: 0,0:06:03.12,0:06:06.60,Default,,0000,0000,0000,,and also supporting\Nindividuals with the disease.
Dialogue: 0,0:06:07.84,0:06:09.18,Default,,0000,0000,0000,,Using traditional media,
Dialogue: 0,0:06:09.20,0:06:13.62,Default,,0000,0000,0000,,we garnered around\N100-150 people around the world
Dialogue: 0,0:06:13.64,0:06:14.90,Default,,0000,0000,0000,,who we asked,
Dialogue: 0,0:06:14.92,0:06:18.18,Default,,0000,0000,0000,,would you give us your blood,\Nyour tissue, your medical histories,
Dialogue: 0,0:06:18.20,0:06:19.40,Default,,0000,0000,0000,,your medical records?
Dialogue: 0,0:06:20.20,0:06:22.04,Default,,0000,0000,0000,,And we brought all of that together.
Dialogue: 0,0:06:22.92,0:06:26.88,Default,,0000,0000,0000,,We quickly learned that this shared\Nresource was not going to be enough.
Dialogue: 0,0:06:27.92,0:06:33.26,Default,,0000,0000,0000,,And so we decided we had\Nto do hardcore bench science --
Dialogue: 0,0:06:33.28,0:06:34.64,Default,,0000,0000,0000,,hardcore research.
Dialogue: 0,0:06:35.40,0:06:37.72,Default,,0000,0000,0000,,So we borrowed bench space\Nat a lab at Harvard.
Dialogue: 0,0:06:38.20,0:06:40.98,Default,,0000,0000,0000,,A wonderful neighbor\Ncame a couple times a week
Dialogue: 0,0:06:41.00,0:06:45.06,Default,,0000,0000,0000,,and sat with the kids from 8pm to 2am
Dialogue: 0,0:06:45.08,0:06:47.42,Default,,0000,0000,0000,,while Pat and I extracted DNA,
Dialogue: 0,0:06:47.44,0:06:49.18,Default,,0000,0000,0000,,ran and scored gels
Dialogue: 0,0:06:49.20,0:06:50.48,Default,,0000,0000,0000,,and searched for the gene.
Dialogue: 0,0:06:51.24,0:06:53.72,Default,,0000,0000,0000,,Generous postdocs\Ntutored us as we went along.
Dialogue: 0,0:06:54.64,0:06:56.84,Default,,0000,0000,0000,,Within a few years, we found the gene.
Dialogue: 0,0:06:57.36,0:07:00.38,Default,,0000,0000,0000,,We patented it so that\Nit would be freely available.
Dialogue: 0,0:07:00.40,0:07:02.46,Default,,0000,0000,0000,,We created a diagnostic test.
Dialogue: 0,0:07:02.48,0:07:04.64,Default,,0000,0000,0000,,We put together a research consortium.
Dialogue: 0,0:07:05.60,0:07:08.80,Default,,0000,0000,0000,,We held research meetings\Nand opened a center of excellence.
Dialogue: 0,0:07:09.36,0:07:14.74,Default,,0000,0000,0000,,We found more than 4,000 people\Naround the world who had PXE,
Dialogue: 0,0:07:14.76,0:07:16.70,Default,,0000,0000,0000,,and held patient meetings
Dialogue: 0,0:07:16.72,0:07:19.28,Default,,0000,0000,0000,,and did clinical trials and studies.
Dialogue: 0,0:07:20.84,0:07:22.34,Default,,0000,0000,0000,,Through all this,
Dialogue: 0,0:07:22.36,0:07:23.64,Default,,0000,0000,0000,,we lived with fear.
Dialogue: 0,0:07:25.04,0:07:27.84,Default,,0000,0000,0000,,Fear of the disease\Nbreathing down our neck
Dialogue: 0,0:07:29.36,0:07:30.68,Default,,0000,0000,0000,,while the clock ticked.
Dialogue: 0,0:07:31.28,0:07:33.44,Default,,0000,0000,0000,,Fear of researchers,
Dialogue: 0,0:07:34.20,0:07:38.04,Default,,0000,0000,0000,,so well credentialed and positioned\Nin a world made for them.
Dialogue: 0,0:07:38.92,0:07:41.36,Default,,0000,0000,0000,,Fear that we were making\Nthe wrong choices.
Dialogue: 0,0:07:42.44,0:07:44.78,Default,,0000,0000,0000,,Fear that the naysayers were right
Dialogue: 0,0:07:44.80,0:07:47.92,Default,,0000,0000,0000,,and the cats would simply find a new food.
Dialogue: 0,0:07:48.80,0:07:51.98,Default,,0000,0000,0000,,But greater than all these fears\Nwas our drive to make a difference
Dialogue: 0,0:07:52.00,0:07:55.00,Default,,0000,0000,0000,,for our kids and for all those\Nwe had met along the way.
Dialogue: 0,0:07:56.28,0:07:57.50,Default,,0000,0000,0000,,And very quickly,
Dialogue: 0,0:07:57.52,0:08:00.26,Default,,0000,0000,0000,,we also realized what we\Nwere doing for one disease,
Dialogue: 0,0:08:00.28,0:08:02.40,Default,,0000,0000,0000,,we should do for all diseases.
Dialogue: 0,0:08:04.20,0:08:06.02,Default,,0000,0000,0000,,We joined with, and I eventually led,
Dialogue: 0,0:08:06.04,0:08:07.26,Default,,0000,0000,0000,,Genetic Alliance --
Dialogue: 0,0:08:07.28,0:08:09.58,Default,,0000,0000,0000,,a network of health advocacy,
Dialogue: 0,0:08:09.60,0:08:10.82,Default,,0000,0000,0000,,patient advocacy,
Dialogue: 0,0:08:10.84,0:08:12.48,Default,,0000,0000,0000,,research and health organizations.
Dialogue: 0,0:08:13.16,0:08:15.62,Default,,0000,0000,0000,,We built scalable\Nand extensible resources,
Dialogue: 0,0:08:15.64,0:08:18.46,Default,,0000,0000,0000,,like biobanks and registries\Nand directories of support
Dialogue: 0,0:08:18.48,0:08:19.80,Default,,0000,0000,0000,,for all diseases.
Dialogue: 0,0:08:20.80,0:08:24.86,Default,,0000,0000,0000,,And as I learned about all those diseases\Nand all those disease communities,
Dialogue: 0,0:08:24.88,0:08:27.74,Default,,0000,0000,0000,,I realized that there were\Ntwo secrets in health care
Dialogue: 0,0:08:27.76,0:08:29.56,Default,,0000,0000,0000,,that were impacting me greatly.
Dialogue: 0,0:08:30.48,0:08:31.74,Default,,0000,0000,0000,,The first:
Dialogue: 0,0:08:31.76,0:08:35.18,Default,,0000,0000,0000,,there are no ready answers\Nfor people like my kids
Dialogue: 0,0:08:35.20,0:08:37.14,Default,,0000,0000,0000,,or all the people I was working with,
Dialogue: 0,0:08:37.16,0:08:39.20,Default,,0000,0000,0000,,whether common or rare conditions.
Dialogue: 0,0:08:39.92,0:08:41.16,Default,,0000,0000,0000,,And the second secret:
Dialogue: 0,0:08:41.76,0:08:45.86,Default,,0000,0000,0000,,the answers lie in all of us together,
Dialogue: 0,0:08:45.88,0:08:47.36,Default,,0000,0000,0000,,donating our data,
Dialogue: 0,0:08:48.24,0:08:50.54,Default,,0000,0000,0000,,our biological samples
Dialogue: 0,0:08:50.56,0:08:52.28,Default,,0000,0000,0000,,and ultimately ourselves.
Dialogue: 0,0:08:54.44,0:08:57.78,Default,,0000,0000,0000,,There is a small\Ngroundswell of individuals
Dialogue: 0,0:08:57.80,0:09:00.06,Default,,0000,0000,0000,,who are working to change this.
Dialogue: 0,0:09:00.08,0:09:03.14,Default,,0000,0000,0000,,Citizen scientists, activists, hacks
Dialogue: 0,0:09:03.16,0:09:06.34,Default,,0000,0000,0000,,who are using crowdsourcing,\Ndo-it-yourself science
Dialogue: 0,0:09:06.36,0:09:07.56,Default,,0000,0000,0000,,are changing the game.
Dialogue: 0,0:09:08.60,0:09:11.52,Default,,0000,0000,0000,,Even President Obama\Nand Vice President Biden
Dialogue: 0,0:09:12.68,0:09:14.38,Default,,0000,0000,0000,,are evangelists for the idea
Dialogue: 0,0:09:14.40,0:09:16.88,Default,,0000,0000,0000,,that people should be\Npartners in research.
Dialogue: 0,0:09:17.68,0:09:20.28,Default,,0000,0000,0000,,This is a founding principle\Nof our organization.
Dialogue: 0,0:09:20.96,0:09:23.10,Default,,0000,0000,0000,,Sure, it's really hard
Dialogue: 0,0:09:23.12,0:09:26.32,Default,,0000,0000,0000,,to discover and develop\Ninterventions and therapies.
Dialogue: 0,0:09:27.48,0:09:29.82,Default,,0000,0000,0000,,The science is hard,
Dialogue: 0,0:09:29.84,0:09:32.12,Default,,0000,0000,0000,,the regulatory regime is difficult.
Dialogue: 0,0:09:32.96,0:09:35.98,Default,,0000,0000,0000,,There are a lot of stakeholders\Nwith lots of interests
Dialogue: 0,0:09:36.00,0:09:40.28,Default,,0000,0000,0000,,and misaligned incentives\Nlike publishing, promotion and tenure.
Dialogue: 0,0:09:41.36,0:09:44.78,Default,,0000,0000,0000,,I don't fault scientists\Nfor following this path,
Dialogue: 0,0:09:44.80,0:09:47.64,Default,,0000,0000,0000,,but I challenge them and us\Nto do this differently.
Dialogue: 0,0:09:48.40,0:09:51.56,Default,,0000,0000,0000,,To recognize that people\Nare at the center.
Dialogue: 0,0:09:53.40,0:09:55.18,Default,,0000,0000,0000,,Genetic Alliance has experimented
Dialogue: 0,0:09:55.20,0:09:58.68,Default,,0000,0000,0000,,in what it will take\Nto transform these crusty systems.
Dialogue: 0,0:10:00.92,0:10:03.16,Default,,0000,0000,0000,,Our goal is to work without boundaries.
Dialogue: 0,0:10:03.88,0:10:07.00,Default,,0000,0000,0000,,That sounds abstract,\Nbut for us it's quite practical.
Dialogue: 0,0:10:09.40,0:10:13.10,Default,,0000,0000,0000,,When we're frustrated\Nthat entities won't share data --
Dialogue: 0,0:10:13.12,0:10:18.22,Default,,0000,0000,0000,,data that comes from people who gave\Ntheir energy, their time, their blood
Dialogue: 0,0:10:18.24,0:10:19.76,Default,,0000,0000,0000,,and even their tears --
Dialogue: 0,0:10:20.52,0:10:22.14,Default,,0000,0000,0000,,we need to stop and ask,
Dialogue: 0,0:10:22.16,0:10:25.28,Default,,0000,0000,0000,,"How is it true that we\Ncould share, but we aren't?"
Dialogue: 0,0:10:25.84,0:10:27.36,Default,,0000,0000,0000,,We're part of this system, too.
Dialogue: 0,0:10:30.44,0:10:34.56,Default,,0000,0000,0000,,How do we make it\Nso that people can share ideas freely?
Dialogue: 0,0:10:35.40,0:10:39.88,Default,,0000,0000,0000,,So that people can take risks\Nand move closer to one another?
Dialogue: 0,0:10:41.48,0:10:44.74,Default,,0000,0000,0000,,This leads to a dissolving\Nof us versus them,
Dialogue: 0,0:10:44.76,0:10:48.12,Default,,0000,0000,0000,,not only for organizations\Nbut also for individuals.
Dialogue: 0,0:10:48.72,0:10:52.10,Default,,0000,0000,0000,,If I'm going to ask\Norganizations or individuals
Dialogue: 0,0:10:52.12,0:10:54.34,Default,,0000,0000,0000,,to strive for these standards,
Dialogue: 0,0:10:54.36,0:10:59.24,Default,,0000,0000,0000,,then I too need to explore\Nmy own being and my practices.
Dialogue: 0,0:11:00.12,0:11:03.38,Default,,0000,0000,0000,,If I'm going to ask clinicians\Nand researchers and administrators
Dialogue: 0,0:11:03.40,0:11:04.98,Default,,0000,0000,0000,,to take risks,
Dialogue: 0,0:11:05.00,0:11:08.00,Default,,0000,0000,0000,,then I, Sharon,\Nneed to take risks as well.
Dialogue: 0,0:11:08.84,0:11:11.68,Default,,0000,0000,0000,,I need to face my personal fears.
Dialogue: 0,0:11:12.68,0:11:15.56,Default,,0000,0000,0000,,My fear of not having enough impact.
Dialogue: 0,0:11:17.40,0:11:19.88,Default,,0000,0000,0000,,My fear of not leading well.
Dialogue: 0,0:11:21.00,0:11:23.92,Default,,0000,0000,0000,,My fear of not being enough.
Dialogue: 0,0:11:26.72,0:11:30.66,Default,,0000,0000,0000,,Just before they entered their teens,\Nour kids stopped us in our tracks
Dialogue: 0,0:11:30.68,0:11:34.38,Default,,0000,0000,0000,,and said, "You have to stop worrying\Nabout making a difference,
Dialogue: 0,0:11:34.40,0:11:35.66,Default,,0000,0000,0000,,making an impact,
Dialogue: 0,0:11:35.68,0:11:39.66,Default,,0000,0000,0000,,and instead, like us,\Nlearn to live with disease
Dialogue: 0,0:11:39.68,0:11:41.56,Default,,0000,0000,0000,,rather than fight it."
Dialogue: 0,0:11:44.60,0:11:45.90,Default,,0000,0000,0000,,I have to ask,
Dialogue: 0,0:11:45.92,0:11:48.16,Default,,0000,0000,0000,,where does all my fear come from?
Dialogue: 0,0:11:49.32,0:11:53.08,Default,,0000,0000,0000,,The kids' declaration\Nshines a spotlight on that fear.
Dialogue: 0,0:11:53.76,0:11:56.84,Default,,0000,0000,0000,,It arises from a bedrock of love.
Dialogue: 0,0:11:57.92,0:12:00.48,Default,,0000,0000,0000,,I love Elizabeth and Ian.
Dialogue: 0,0:12:02.32,0:12:04.44,Default,,0000,0000,0000,,I love people with PXE.
Dialogue: 0,0:12:05.52,0:12:07.64,Default,,0000,0000,0000,,I love people with any disease.
Dialogue: 0,0:12:08.72,0:12:09.92,Default,,0000,0000,0000,,I love people.
Dialogue: 0,0:12:12.52,0:12:17.14,Default,,0000,0000,0000,,Some of my colleagues have discovered\Nthat it is not death we fear,
Dialogue: 0,0:12:17.16,0:12:19.36,Default,,0000,0000,0000,,it is the enormity of our loving.
Dialogue: 0,0:12:20.76,0:12:25.54,Default,,0000,0000,0000,,This expansive love opens me to great pain
Dialogue: 0,0:12:25.56,0:12:27.28,Default,,0000,0000,0000,,as I face loss.
Dialogue: 0,0:12:29.04,0:12:31.40,Default,,0000,0000,0000,,As I discover my fear,
Dialogue: 0,0:12:32.16,0:12:33.94,Default,,0000,0000,0000,,I discover that I
Dialogue: 0,0:12:33.96,0:12:35.58,Default,,0000,0000,0000,,and all those around me
Dialogue: 0,0:12:35.60,0:12:38.32,Default,,0000,0000,0000,,have boundless capacity for love.
Dialogue: 0,0:12:41.64,0:12:43.04,Default,,0000,0000,0000,,And I also discover
Dialogue: 0,0:12:44.24,0:12:45.84,Default,,0000,0000,0000,,as I move into this fear,
Dialogue: 0,0:12:47.40,0:12:49.86,Default,,0000,0000,0000,,that I can learn many new things
Dialogue: 0,0:12:49.88,0:12:51.24,Default,,0000,0000,0000,,and find paths
Dialogue: 0,0:12:52.32,0:12:56.18,Default,,0000,0000,0000,,to things like practical solutions
Dialogue: 0,0:12:56.20,0:12:59.36,Default,,0000,0000,0000,,as well as the core of healing and health.
Dialogue: 0,0:13:03.00,0:13:06.56,Default,,0000,0000,0000,,I don't fear fear the way I used to.
Dialogue: 0,0:13:08.56,0:13:13.70,Default,,0000,0000,0000,,In fact lately, with enormous support\Nfrom all my fellow journeyers,
Dialogue: 0,0:13:13.72,0:13:17.04,Default,,0000,0000,0000,,I notice that it's not a warning\Nthe way it used to be.
Dialogue: 0,0:13:18.04,0:13:20.90,Default,,0000,0000,0000,,I notice that instead,
Dialogue: 0,0:13:20.92,0:13:22.82,Default,,0000,0000,0000,,it's an invitation to go forward
Dialogue: 0,0:13:22.84,0:13:26.08,Default,,0000,0000,0000,,because in it lies love\Nand the path to greater love.
Dialogue: 0,0:13:27.64,0:13:31.24,Default,,0000,0000,0000,,If I turn with gentle curiosity\Ntoward that fear,
Dialogue: 0,0:13:32.80,0:13:37.86,Default,,0000,0000,0000,,I find enormous wealth\Nwithin myself and others
Dialogue: 0,0:13:37.88,0:13:41.20,Default,,0000,0000,0000,,and the ability to step into challenges\Nthat I never thought I could.
Dialogue: 0,0:13:42.96,0:13:45.32,Default,,0000,0000,0000,,My kids are ahead of me\Non that path still.
Dialogue: 0,0:13:46.36,0:13:48.26,Default,,0000,0000,0000,,At ages 29 and 27,
Dialogue: 0,0:13:48.28,0:13:50.74,Default,,0000,0000,0000,,they declare they are happy and healthy
Dialogue: 0,0:13:50.76,0:13:55.88,Default,,0000,0000,0000,,despite having manifestations of PXE\Nin their skin and eyes and arteries.
Dialogue: 0,0:13:57.16,0:14:00.50,Default,,0000,0000,0000,,And so I invite you, us, we,
Dialogue: 0,0:14:00.52,0:14:02.10,Default,,0000,0000,0000,,to turn toward our fear;
Dialogue: 0,0:14:02.12,0:14:05.06,Default,,0000,0000,0000,,to embrace the things that scare us
Dialogue: 0,0:14:05.08,0:14:07.22,Default,,0000,0000,0000,,and find the love at the center.
Dialogue: 0,0:14:07.24,0:14:09.46,Default,,0000,0000,0000,,We'll not only find ourselves there
Dialogue: 0,0:14:09.48,0:14:13.46,Default,,0000,0000,0000,,but we'll also be able\Nto step into the shoes of those we fear
Dialogue: 0,0:14:13.48,0:14:14.84,Default,,0000,0000,0000,,and those who fear us.
Dialogue: 0,0:14:15.44,0:14:17.52,Default,,0000,0000,0000,,If we breathe into that fear
Dialogue: 0,0:14:18.56,0:14:23.22,Default,,0000,0000,0000,,and are vulnerable with the systems\Nand people who challenge us,
Dialogue: 0,0:14:23.24,0:14:27.32,Default,,0000,0000,0000,,our power as changemakers\Ngrows exponentially.
Dialogue: 0,0:14:28.40,0:14:29.66,Default,,0000,0000,0000,,And when we realize
Dialogue: 0,0:14:29.68,0:14:33.34,Default,,0000,0000,0000,,that working on our inner life\Nis working on our outer life
Dialogue: 0,0:14:33.36,0:14:36.10,Default,,0000,0000,0000,,and outer work is inner work,
Dialogue: 0,0:14:36.12,0:14:38.26,Default,,0000,0000,0000,,we get down to what is real
Dialogue: 0,0:14:38.28,0:14:39.70,Default,,0000,0000,0000,,and shit gets done.
Dialogue: 0,0:14:39.72,0:14:41.18,Default,,0000,0000,0000,,(Laughter)
Dialogue: 0,0:14:41.20,0:14:45.02,Default,,0000,0000,0000,,There is no limit\Nto what we can accomplish together.
Dialogue: 0,0:14:45.04,0:14:46.26,Default,,0000,0000,0000,,Thank you.
Dialogue: 0,0:14:46.28,0:14:48.84,Default,,0000,0000,0000,,(Applause)