ROB: RETT SYNDROME IS A RARE
DISEASE THAT AFFECTS 1 IN 10,000
GIRLS. IT’S EVEN MORE RARE IN BOYS. A RETT SYNDROME DIAGNOSIS IS
LIFE-CHANGING FOR FAMILIES. SAMANTHA BRANT, WHOSE DAUGHTER
MACY LIVES WITH RETT SYNDROME,
IS HERE WITH ME THIS MORNING. THANK YOU SO MUCH FOR BEING WITH
US. FOR THOSE WHO DO NOT KNOW, TELL
US WHAT RETT SYNDROME IS. SAMANTHA: IT IS LIKE HAVING
PARKINSON’S, EPILEPSY, AUTISM,
AND ANXIETY. ONE IN 10,000 GIRLS AND ONE IN
ONE MILLION BOYS FIGHTS RETT’S
SYNDROME. EVERY 90 MINUTES, A CHILD WAS
RED SYNDROME IS BORN. ROB: I KNOW YOUR DAUGHTER IS
YOUR INSPIRATION TO GET
INVOLVED. YOU ARE NOW AN ADVOCATE. TELL US MORE. SAMANTHA: AFTER MACY’S DIAGNOSIS
IN 2016, I WANTED TO GIVE BACK. I HAD NO CLUE WHAT RETT SYNDROME
WAS UNTIL THAT DATE. I HAVE EDUCATED MYSELF. I WENT TO WORK AS A CAREER AS
THE FAMILY AND COMMUNITY
ENGAGEMENT MANAGER TO HELP OTHER
NEWLY DIAGNOSED FAMILIES ACROSS
THE ENTIRE UNITED STATES AS WELL
AS INTERNATIONALLY. WE CONNECT TO TOP-NOTCH RESEARCH
AS WELL AS FAMILY EMPOWERMENT. ROB: FOR THOSE GETTING THAT
DIAGNOSIS, I AM SURE IT IS
EXTREMELY DIFFICULT. WHAT YOU MAY DO AS FIRST STEPS? SAMANTHA: I REACHED OUT TO
THATAND DRUM.ORG. –TO RETTSYNDROME.ORG. THEY HELP ME GUIDE WHERE I
SHOULD BE GOING NEXT AND PUT ME
IN CONNECTION WITH ANOTHER
FAMILY, WHICH WAS REALLY
HELPFUL. I GOT INVOLVED WITH FUNDRAISING. ROB: YOU HAVE A BIG CHARITY
EVENT COMING UP. SAMANTHA: RAISE A GLASS AGAINST
RETT SYNDROME. THIS IS OUR THIRD YEAR. LAST YEAR, WE RAISED ABOUT
$30,000. WE HAD ABOUT 15 FAMILIES COME. WE LIKE TO EDUCATE, ADVOCATE IN
THE PUBLIC. WE WANT EVERYONE TO KNOW ABOUT
IT AND SHARE ABOUT OUR WONDERFUL
CHILDREN. ROB: THE LOGISTICS OF IT? SAMANTHA: SEPTEMBER 14, 3:00 TO
7:00, FAMILY-FRIENDLY, AT
AUSTIN’S BAR AND GRILL. WE WILL HAVE FACEPAINTING. THERE WILL BE TASTY BEER. THERE ARE A LOT OF THINGS GOING
ON. ROB: YOU ARE LIVING PROOF OF
THAT. THANKS FOR JOINING US. CHECK IN ON A GREAT CAUSE.