Transcript for Young Celiac disease activist invited to the White House
>> David: FINALLY TONIGHT HERE,
AS YOU KNOW, MAY WAS CELIAC
AS YOU KNOW, MAY WAS CELIAC
DISEASE AWARENESS MONTH AND
DISEASE AWARENESS MONTH AND
YOU'LL REMEMBER THE BOY WHO
YOU'LL REMEMBER THE BOY WHO
WROTE ME A LETTER ABOUT WHAT
WROTE ME A LETTER ABOUT WHAT
HE'S DONE SINCE
HE'S DONE SINCE
IS "AMERICA STRONG."
IS "AMERICA STRONG."
YOU FIRST MET JAX BARI FROM
YOU FIRST MET JAX BARI FROM
PENN VALLEY, PENNSYLVANIA, RIGHT
PENN VALLEY, PENNSYLVANIA, RIGHT
HERE TWO YEARS AGO.
HERE TWO YEARS AGO.
HE WAS JUST EIGHT, READING THE
HE WAS JUST EIGHT, READING THE
LETTER HE WROTE ME.
LETTER HE WROTE ME.
>> HI, I'M JAX BARI.
>> HI, I'M JAX BARI.
LET ME READ MY LETTER.
LET ME READ MY LETTER.
DAVID MUIR ON
DAVID MUIR ON
"WORLD NEWS TONIGHT."
"WORLD NEWS TONIGHT."
>> David: JAX IS WRITING ABOUT
>> David: JAX IS WRITING ABOUT
CELIAC DISEASE, AN AUTOIMMUNE
CELIAC DISEASE, AN AUTOIMMUNE
DISORDER TRIGGERED BY EATING
DISORDER TRIGGERED BY EATING
GLUTEN.
GLUTEN.
>> DEAR MR. MUIR, WHEN I TURNED
>> DEAR MR. MUIR, WHEN I TURNED
EIGHT IN MARCH, I WISHED FOR A
EIGHT IN MARCH, I WISHED FOR A
CURE FOR CELIAC DISEASE.
CURE FOR CELIAC DISEASE.
>> David: JAX WATCHES THE NEWS
>> David: JAX WATCHES THE NEWS
AND HE HOPED WE WOULD GET THE
AND HE HOPED WE WOULD GET THE
WORD OUT.
WORD OUT.
>> I WATCH YOU EVERY NIGHT WITH
>> I WATCH YOU EVERY NIGHT WITH
MY DAD.
MY DAD.
YOU ARE A GREAT STORYTELLER.
YOU ARE A GREAT STORYTELLER.
AND I HAVE LEARNED A LOT
AND I HAVE LEARNED A LOT
FROM YOU,
FROM YOU,
INCLUDING ABOUT THE NIH.
INCLUDING ABOUT THE NIH.
>> David: THE NATIONAL
>> David: THE NATIONAL
INSTITUTES OF HEALTH SAYS
INSTITUTES OF HEALTH SAYS
2 MILLION AMERICANS HAVE CELIAC
2 MILLION AMERICANS HAVE CELIAC
DISEASE.
DISEASE.
THAT NUMBER COULD BE EVEN
THAT NUMBER COULD BE EVEN
HIGHER.
HIGHER.
>> EATING WITHOUT FEAR IS OUR
>> EATING WITHOUT FEAR IS OUR
HOPE.
HOPE.
FOOD INSECURITY HAPPENS FOR
FOOD INSECURITY HAPPENS FOR
CELIACS EVERY DAY.
CELIACS EVERY DAY.
CAN YOU PLEASE HELP ME TELL THE
CAN YOU PLEASE HELP ME TELL THE
CELIAC STORY THIS MAY WHICH IS
CELIAC STORY THIS MAY WHICH IS
CELIAC AWARENESS MONTH?
CELIAC AWARENESS MONTH?
>> David: AND WHEN OTHER
>> David: AND WHEN OTHER
CHILDREN LEARNED JAX WAS
CHILDREN LEARNED JAX WAS
REACHING OUT, THEY DID TOO.
REACHING OUT, THEY DID TOO.
>> HEY, DAVID.
>> HEY, DAVID.
>> David: THEY ALSO HAVE CELIAC
>> David: THEY ALSO HAVE CELIAC
DISEASE.
DISEASE.
>> I WISH WHEN I WENT TO A PARTY
>> I WISH WHEN I WENT TO A PARTY
I DIDN'T HAVE TO BRING MY OWN
I DIDN'T HAVE TO BRING MY OWN
FOOD AND DIDN'T HAVE TO WORRY
FOOD AND DIDN'T HAVE TO WORRY
ABOUT CROSS-CONTAMINATION.
ABOUT CROSS-CONTAMINATION.
>> A STRAIGHT GLUTEN-FREE DIET
>> A STRAIGHT GLUTEN-FREE DIET
IS PRETTY TOUGH.
IS PRETTY TOUGH.
>> David: JAX AND HIS FAMILY
>> David: JAX AND HIS FAMILY
WOULD TRAVEL TO CAPITOL HILL
WOULD TRAVEL TO CAPITOL HILL
ASKING FOR RESEARCH AND FUNDING
ASKING FOR RESEARCH AND FUNDING
FOR FOOD LABELING.
FOR FOOD LABELING.
NOW HE MADE IT TO THE
NOW HE MADE IT TO THE
WHITE HOUSE, INVITED BY
WHITE HOUSE, INVITED BY
PRESIDENT BIDEN.
PRESIDENT BIDEN.
SO MANY OF YOU AT HOME MOVED TO
SO MANY OF YOU AT HOME MOVED TO
HELP, INCLUDING
HELP, INCLUDING
PENNSYLVANIA STATE
PENNSYLVANIA STATE
SENATOR AMANDA CAPILETTI WHO
SENATOR AMANDA CAPILETTI WHO
JUST TODAY ASKED JAX TO HELP HER
JUST TODAY ASKED JAX TO HELP HER
PRESENT A $100,000 GRANT TO THE
PRESENT A $100,000 GRANT TO THE
CHILDREN'S HOSPITAL OF
CHILDREN'S HOSPITAL OF
PHILADELPHIA FOR CELIAC
PHILADELPHIA FOR CELIAC
RESEARCH.
RESEARCH.
AND SO BACK HERE TONIGHT.
AND SO BACK HERE TONIGHT.
>> HI, DAVID.
>> HI, DAVID.
>> David: HELLO, JAX.
>> David: HELLO, JAX.
>> I AM CHECKING IN TWO YEARS
>> I AM CHECKING IN TWO YEARS
LATER NOW, AND I AM 10 YEARS
LATER NOW, AND I AM 10 YEARS
OLD.
OLD.
RESEARCHERS ARE WORKING TO FIND
RESEARCHERS ARE WORKING TO FIND
A TREATMENT AND A CURE, I AM
A TREATMENT AND A CURE, I AM
WORKING TO LABEL GLUTEN ON ALL
WORKING TO LABEL GLUTEN ON ALL
PACKAGED FOODS IN THE U.S. JUST
PACKAGED FOODS IN THE U.S. JUST
LIKE IT IS IN 85 OTHER COUNTRIES
LIKE IT IS IN 85 OTHER COUNTRIES
WORLDWIDE.
WORLDWIDE.
>> David: KEEP GOING, JAX.
This transcript has been automatically generated and may not be 100% accurate.