WEBVTT

00:00:00.367 --> 00:00:03.636
MONTHS.

00:00:03.703 --> 00:00:05.071
>> NOW TO THAT BIG DONATION TO

00:00:05.138 --> 00:00:06.506
RILEY...IT IS DEDICATED TO

00:00:06.573 --> 00:00:08.174
DUCHENNE MUSCULAR DYSTROPHY,

00:00:08.241 --> 00:00:09.275
WHICH IS THE MOST COMMON FORM OF

00:00:09.342 --> 00:00:10.677
THE GENETIC DISORDER.

00:00:10.744 --> 00:00:12.445
THE HOSPITAL ALREADY HAS A

00:00:12.512 --> 00:00:14.247
STRONG PRESENCE IN DUCHENNE, BUT

00:00:14.314 --> 00:00:15.382
THE FIVE-MILLION-DOLLAR GIFT

00:00:15.448 --> 00:00:16.416
AIMS AT GROWING THE RILEY

00:00:16.483 --> 00:00:17.617
PROGRAM, MAKING IT ONE OF THE

00:00:17.684 --> 00:00:18.818
BEST IN THE COUNTRY FOR

00:00:18.885 --> 00:00:20.320
TREATMENT AND RESEARCH.

00:00:20.387 --> 00:00:21.755
ELIZABETH ELKAS IS PRESIDENT AND

00:00:21.821 --> 00:00:23.156
CHIEF EXECUTIVE OFFICER OF THE

00:00:23.223 --> 00:00:24.557
RILEY CHILDREN'S FOUNDATION. SHE

00:00:24.624 --> 00:00:25.892
JOINS ME NOW TO TELL US MORE

00:00:25.959 --> 00:00:33.299
ABOUT THE VISION FOR THIS GIFT.

00:00:33.366 --> 00:00:35.468
HIGH, ELIZABETH DID, -- HI,

00:00:35.535 --> 00:00:36.736
HITTING, THANK YOU FOR BEING ON

00:00:36.803 --> 00:00:37.437
THE SHOW.

00:00:37.504 --> 00:00:40.507
>> THANK YOU FOR HAVING ME.

00:00:40.573 --> 00:00:42.642
>> GIVE US A SNAPSHOT AND

00:00:42.709 --> 00:00:44.811
EXPLAIN HOW DEVASTATING IT CAN

00:00:44.878 --> 00:00:46.646
BE FOR PATIENTS?

00:00:46.713 --> 00:00:47.447
>> DUCHENNE MUSCULAR DYSTROPHY

00:00:47.514 --> 00:00:50.917
IS A GENETIC DISORDER CRITICIZED

00:00:50.984 --> 00:00:55.255
BY PROGRESSIVE WEAKNESS OF THE

00:00:55.321 --> 00:00:57.323
SKELETAL AND LUNG MUSCLES,

00:00:57.390 --> 00:01:00.126
PARTICULARLY DIAGNOSED BY AGE

00:01:00.193 --> 00:01:00.326
FIVE.

00:01:00.393 --> 00:01:01.561
TODAY MOST PATIENTS DIE FROM

00:01:01.628 --> 00:01:03.763
HEART MUSCLE WEAKNESS, LEADING

00:01:03.830 --> 00:01:04.631
TO HEART FAILURE.

00:01:04.697 --> 00:01:05.165
>> OKAY.

00:01:05.231 --> 00:01:07.133
AND I UNDERSTAND THAT TYPICALLY

00:01:07.200 --> 00:01:09.002
PEOPLE LIVE INTO THEIR 30s AND

00:01:09.068 --> 00:01:10.470
40s TODAY, BUT WE'LL TALK MORE

00:01:10.537 --> 00:01:12.572
ABOUT THE RESEARCH IN A LITTLE

00:01:12.639 --> 00:01:12.739
BIT.

00:01:12.806 --> 00:01:14.007
THIS GIFT IS INTERESTING, IT

00:01:14.073 --> 00:01:15.875
COMES FROM A FAMILY RIGHT HERE

00:01:15.942 --> 00:01:19.879
IN INDIANA WHO HAS A PERSONAL

00:01:19.946 --> 00:01:20.914
CONNECTION TO DUCHENNE.

00:01:20.980 --> 00:01:23.349
TELL US ABOUT THEIR VISION FOR

00:01:23.416 --> 00:01:24.651
THIS FIVE MILLION DOLLAR GIFT.

00:01:24.717 --> 00:01:26.986
>> THIS FAMILY IS REMARKABLE.

00:01:27.053 --> 00:01:31.391
THIS IS A TREMENDOUS GIFT FROM

00:01:31.458 --> 00:01:35.295
FAMILIES, AIMS TO MAKE RILEY A

00:01:35.361 --> 00:01:36.296
ONE-STOP SHOP FOR DUCHENNE

00:01:36.362 --> 00:01:39.199
PATIENTS AND FAMILIES.

00:01:39.265 --> 00:01:41.468
TO ENSURE NO ONE NEEDS TO LEAVE

00:01:41.534 --> 00:01:42.135
INDIANA FOR CARE.

00:01:42.202 --> 00:01:44.304
>> ONE BENEFIT IS GOING TO BE AN

00:01:44.370 --> 00:01:45.572
IMMEDIATE IMPACT ON CARE.

00:01:45.638 --> 00:01:47.440
IT WAS SO INTERESTING, I LEARNED

00:01:47.507 --> 00:01:51.211
THESE KIDS OFTEN HAVE TO SEE UP

00:01:51.277 --> 00:01:56.082
TO TEN SPECIALISTS FOR THEIR

00:01:56.149 --> 00:01:56.716
TREATMENT.

00:01:56.783 --> 00:01:59.319
EXPLAIN HOW THIS GIFT WILL HELP

00:01:59.385 --> 00:02:00.620
SIMPLIFY THAT?

00:02:00.687 --> 00:02:03.857
>> FOR FAMILIES IMPACTED, A TRIP

00:02:03.923 --> 00:02:06.359
TO THE HOSPITAL MEANS NAVIGATING

00:02:06.426 --> 00:02:07.694
MULTIPLE SPECIALTIES AND

00:02:07.760 --> 00:02:08.027
APPOINTMENTS.

00:02:08.094 --> 00:02:09.529
CARE COORDINATORS MAKE ALL THE

00:02:09.596 --> 00:02:11.030
DIFFERENCE IN THE PATIENT

00:02:11.097 --> 00:02:11.331
EXPERIENCE.

00:02:11.397 --> 00:02:13.833
SO THIS GIFT WILL ENABLE US TO

00:02:13.900 --> 00:02:15.335
GO FROM HAVING ONE CARE

00:02:15.401 --> 00:02:17.103
COORDINATOR TO THREE.

00:02:17.170 --> 00:02:19.205
THEREBY SERVING OUR PATIENTS AND

00:02:19.272 --> 00:02:19.506
FAMILIES.

00:02:19.572 --> 00:02:20.540
IT IS FANTASTIC.

00:02:20.607 --> 00:02:22.976
AND THE GIFT ALSO ALLOWS RILEY

00:02:23.042 --> 00:02:25.645
TO ESTABLISH A DUCHENNE FAMILY

00:02:25.712 --> 00:02:27.947
SERVICE PROGRAM BASICALLY A

00:02:28.014 --> 00:02:30.149
CONCIERGE SERVICE TO COORDINATE

00:02:30.216 --> 00:02:31.518
TRANSPORTATION, IDENTIFY HOTELS,

00:02:31.584 --> 00:02:33.720
AND MAKE ACCOMMODATIONS TO MEET

00:02:33.786 --> 00:02:35.255
A CHILD'S MEDICAL NEEDS.

00:02:35.321 --> 00:02:37.323
IN SHORT, THEY ASSIST WITH

00:02:37.390 --> 00:02:39.659
PLANNING TO EASE THE BURDEN ON

00:02:39.726 --> 00:02:39.926
FAMILIES.

00:02:39.993 --> 00:02:42.662
THESE SERVICES BY THE RILEY TEAM

00:02:42.729 --> 00:02:44.831
WILL BE PROVIDED FREE OF CHARGE.

00:02:44.898 --> 00:02:46.633
ALONGSIDE THE GROWTH OF THE

00:02:46.699 --> 00:02:48.935
PROGRAM, RILEY HAS FORMALLY

00:02:49.002 --> 00:02:50.937
APPLIED TO BE A PARENT PROJECT

00:02:51.004 --> 00:02:51.604
MUSCULAR DYSTROPHY CARE CENTER.

00:02:51.671 --> 00:02:52.972
THIS STAMP OF APPROVAL IS

00:02:53.039 --> 00:02:55.174
IMPORTANT BECAUSE IT SIGNALS TO

00:02:55.241 --> 00:02:56.209
PARENTS THEIR CHILDREN CAN GET

00:02:56.276 --> 00:02:58.044
THE VERY BEST CARE IN THE

00:02:58.111 --> 00:03:00.413
COUNTRY RIGHT HERE AT RILEY.

00:03:00.480 --> 00:03:03.049
>> AND A BIG FUTURE IMPACT OF

00:03:03.116 --> 00:03:05.251
THIS MONEY, AS WE LOOK FORWARD

00:03:05.318 --> 00:03:07.086
IS HOW IT IS GOING TO IMPACT

00:03:07.153 --> 00:03:07.353
RESEARCH.

00:03:07.420 --> 00:03:08.688
YOU MENTIONED HEART

00:03:08.755 --> 00:03:09.822
COMPLICATIONS, IT IS THE NUMBER

00:03:09.889 --> 00:03:11.391
ONE CAUSE OF DEATH FOR PEOPLE

00:03:11.457 --> 00:03:13.026
WITH DUCHENNE.

00:03:13.092 --> 00:03:15.028
SO, EXPLAIN HOW THESE DOLLARS

00:03:15.094 --> 00:03:16.362
ARE REALLY GOING TO FORWARD

00:03:16.429 --> 00:03:18.031
RESEARCH IN THE AREA OF THE

00:03:18.097 --> 00:03:18.331
HEART?

00:03:18.398 --> 00:03:27.740
>> AT RILEY, DR. LARRY IS

00:03:27.807 --> 00:03:30.076
SLOWING FIBROSIS OF THE HEART

00:03:30.143 --> 00:03:31.444
THROUGH PRECISION MEDICINE.

00:03:31.511 --> 00:03:34.213
HIS GOAL IS TO IDENTIFY

00:03:34.280 --> 00:03:35.515
POTENTIAL THERAPIES AND ADVANCE

00:03:35.582 --> 00:03:36.716
TWO OR THREE TREATMENTS TO

00:03:36.783 --> 00:03:38.384
CLINICAL TRIALS IN THE NEXT FEW

00:03:38.451 --> 00:03:38.585
YEARS.

00:03:38.651 --> 00:03:41.421
IT IS ALSO IMPORTANT TO NOTE

00:03:41.487 --> 00:03:45.058
THAT U.S. NEWS & WORLD REPORT

00:03:45.124 --> 00:03:46.526
RANKS RILEY TOP IN THE NATION,

00:03:46.593 --> 00:03:48.795
AND THE NUMBER ONE PROGRAM IN

00:03:48.861 --> 00:03:49.329
THE MIDWEST.

00:03:49.395 --> 00:03:51.364
LOOKING AHEAD, THE FOCUS IS ON

00:03:51.431 --> 00:03:54.067
CURING PATIENTS BY FIXING THE

00:03:54.133 --> 00:03:55.335
ROOT CAUSE OF DUCHENNE THROUGH

00:03:55.401 --> 00:03:56.970
THE ACCELERATION OF GENE

00:03:57.036 --> 00:03:57.904
THERAPY.

00:03:57.971 --> 00:03:59.806
THIS RESEARCH IS LED BY A DOCTOR

00:03:59.872 --> 00:04:01.207
WHO IS AN INTERNATIONAL

00:04:01.274 --> 00:04:03.743
RECOGNIZED EXPERT IN THE FIELD.

00:04:03.810 --> 00:04:06.112
>> DUCHENNE IS A DEVASTATING

00:04:06.179 --> 00:04:10.316
DISEASE, NO CURE FOR IT AT THIS

00:04:10.383 --> 00:04:10.516
POINT.

00:04:10.583 --> 00:04:12.719
YOU SAY BIG PICTURE, THIS GIFT

00:04:12.785 --> 00:04:14.354
REALLY IS ABOUT OPTIMISM.

00:04:14.420 --> 00:04:15.755
CAN YOU EXPLAIN?

00:04:15.822 --> 00:04:17.590
>> ABSOLUTELY.

00:04:17.657 --> 00:04:20.593
IT'S ALL ABOUT OPTIMISM.

00:04:20.660 --> 00:04:22.562
FOR YEARS THE MEDICAL COMMUNITY

00:04:22.629 --> 00:04:24.897
HAS MADE INCREMENTAL

00:04:24.964 --> 00:04:25.231
IMPROVEMENTS.

00:04:25.298 --> 00:04:27.934
OUR VISION IS TO TAKE A DRAMATIC

00:04:28.001 --> 00:04:29.068
LEAP FORWARD THROUGH RESEARCH

00:04:29.135 --> 00:04:30.737
WHILE MAKING MEANINGFUL IMPACT

00:04:30.803 --> 00:04:34.707
ON ACCESS TO CARE.

00:04:34.774 --> 00:04:37.510
THE COMMITMENT OF FIVE MILLION

00:04:37.577 --> 00:04:39.112
WILL SERVE AS A POWERFUL

00:04:39.178 --> 00:04:41.648
CATALYST TO ELEVATE OUR ALREADY

00:04:41.714 --> 00:04:42.348
STELLAR DUCHENNE PROGRAM AND

00:04:42.415 --> 00:04:44.050
MAKE IT A NATIONAL MODEL.

00:04:44.117 --> 00:04:45.885
THIS SHOWS HOW A FAMILY WITH THE

00:04:45.952 --> 00:04:48.021
CAPACITY TO GIVE CAN CHANGE THE

00:04:48.087 --> 00:04:50.723
OUTCOME FOR SO MUCH.

00:04:50.790 --> 00:04:53.559
THAT'S THE BEAUTY OF

00:04:53.626 --> 00:04:54.627
PHILANTHROPY.