Last month, Jonathan Martinez, a 9 year old boy with Williams syndrome, was one of three victims of a senseless shooting in his special education classroom in San Bernardino, CA. On that day, we grieved the loss of a member of our Williams syndrome family –
a collective family that, in recent years, has grown in both size and emotional connection through social media. In the face of such a terrible tragedy, we wondered again what the world was coming to and what might be next.
That same afternoon, we had our answer, and it was not one that we were expecting. In the face of that terrible tragedy, Jonathan’s parents gave every family affected by Williams syndrome a very special gift. Not emotionally able to face the media personally, they asked their school superintendent to announce their wish that Jonathan’s legacy would be an increased awareness and understanding of Williams syndrome. The media was listening and they responded.
In the days following the shooting, many media representatives called the WSA for information, others quoted the website, and a Los Angeles television station interviewed local families. At last count, Williams syndrome had been mentioned, with at least a short description of the condition, in more than 160 stories. Most, but not all, of the stories were brief and printed in local Los Angeles outlets. But the Los Angeles Times and The Washington Post printed lengthy stories and posted our descriptive videos online, potentially reaching millions of readers. Those stories have had a measurable impact. In just two days following the announcement, there were 60,000 new visitors to the WSA website, and our Facebook post regarding the tragedy reached 265,000 people – a truly phenomenal result.
I am truly sad that it often takes a tragedy for people to take an interest in learning something new, but unfortunately it can’t be denied. The WSA hired a professional PR consultant last fall, and she has been largely unable to get the media interested in doing a story on Williams syndrome, not even around Rare Disease Day in February. Now, at least for this moment, thanks to Jonathan’s parents, all that has changed. Now the media is interested, and so is the public.
Initially, it simply didn’t feel right to get awareness for Williams syndrome in this way, but then I had the honor of speaking to Jonathan’s dad. Mr. Martinez assured me that he and his wife truly want us to take advantage of this opportunity to be heard. And we will do all we can to make this awareness month more meaningful and more memorable.
We will remember Jonathan in special ways at our awareness events, and we will honor Jonathan’s parents at the Santa Monica Walk (click to register and join the walk or donate) on May 20th. We will provide information on Williams syndrome to event attendees and ask each of them to pass it on to someone they know. We will send awareness month press releases out over the wire, and increase our efforts to help event coordinators gain local media coverage. But it’s not just about “any” media coverage. This is the time for us to increase our efforts and to encourage the media to tell the whole story about Williams syndrome. We all want the public to know that our kids are charming and empathetic, social and endearing, but there is so much they need to know as well.
The media needs to give the difficulties of Williams syndrome more than a passing interest. One line about heart surgery and learning challenges is simply not enough. What do you want the media to know? They are listening right now – let’s make sure they know that it’s important for the public to learn the whole story about Williams syndrome. Social media is a powerful tool – create a simple video like the one I’ve included here, post photos of your children with a message for the world about Williams syndrome, change your FB profile photo to reflect a special message – whatever is right for you personally. But don’t just post it to your personal page this year. This year we need to spread the word as broadly as we can. Place it on your page and share it with others on Facebook, Twitter, and Instagram... utilize the hashtags needed to ensure your message will be shared broadly and contain the links folks need to get more information: #Wsawareness, #williamssyndromeawareness, #williamssyndrome, #WSA, and include the Williams Syndrome Association with @WSA and @TheWilliamsSyndromeAssociation. Click for all walks. To start your own personal WSA fundraising page, click here.
Together we can make Awareness Month 2017 different. Together we can support Jonathan’s legacy, ensure that Williams syndrome is no longer a “little known disorder” and brighten the future for individuals with Williams syndrome.