This #ASAwareness is halfway decent because of how things are beautifully unfolding. While it may appear that I chronicle the details of this effort, the brains behind all the major exposure is due to Mike’s tenacity in getting sponsorships that allowed this Camper Campaign to move along with ANGELMAN SYNDROME’s banner on the forefront.
On the 1st day of our conference, we were so moved by so many AS families attending the symposium that Mike made it his mission to spotlight ASF’s efforts. He wrote all the TV stations in Louisville, he armed himself with all the news clippings, the TV segment in SD, the Billboards cascading electronically in two locations within the city, and outlining what we have done to authenticate our journey. Fortunately, our marketing tool, Matthew has been very cooperative that WLKY TV news responded and sponsored to spotlight a segment of our journey.
We got up early, dressed ourselves with our usual Matthew shirts, went to the TV studio and got interviewed for an hour. Aside from the TV segment in SD, we’ve never been on TV and we were always so guarded to speak for AS Community. Inasmuch as this is our journey, we truly want to walk, talk and give it a good representation for the entire community … mainly focusing on AS Awareness, highlight some of the struggles our community is facing alongside us and our personal advocacy for early intervention … for all other types of developmental delay diagnosis.
We weren’t so sure how it will be reported but when we were interviewed, we talked and showcased AS as much as we can. Matthew cooperated for 10 minutes and he was done. He wanted “to do the surprised we coaxed him with”. He told WLKY’s Julie Dolan that he is done, he wanted to go outside and be in the pool. As we wrapped up, we were anxious to see the edited version of the segment.
In the meantime, we promised Matt for a day just to be a family and focused in on him … outside and pool it is!!! As we entered KY Kingdom Amusement Park, Matt was angsty, irritated and he didn’t want to ride anything until we brought him to his element … the water playground. We walked, we soaked, we played until it was time to leave.
Got to our Campground, rested and waited for the news to air. When we saw the news at 5:30, we were very impressed with WLKY’S thorough reporting. They researched our story, went to the Angelman Syndrome Foundation’s on going Symposium, took some clips of the actual conference session and created a montage incorporating all aspects of this AS journey. Today might not seemed eventful … but our hearts were overjoyed of how impactful it was to have this little time that we were able to exposed Angelman Syndrome one segment at a time.
Please watch the interview below:
Continue to tune in as we highlight the good and the bad of our adventures.
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