This blog post is by Lou Melgarejo, the father of three and whose eldest daughter is affected by autism. Lou was the recipient of the Autism Speaks 2011 Speak Out Award. You can find out more about Lou and his family on his blog Lou's Land.
What do you get when you have 300 people from 92 markets and Canada that have helped to fund:
· $173 million in scientific research
· Studies and clinical trials in the areas of sleep disturbances, improved social skills, and effective medical and behavioral treatments.
· 17 autism treatment network sites across North America.
· $3.9 million in local community grants.
You get the Autism Speaks Volunteer Leadership Conference which was held in Chicago, IL this past July 19th – 21st. Recognition, education, inspiration, motivation and celebration were all in play as board chairs, walk chairs and corporate development chairs gathered in the Windy City under the theme Mission Possible!
I have to admit that being new to the Board of Directors of the Chicagoland Chapter I had no idea what to expect out of the conference. I knew I would get the opportunity to meet a lot of great and passionate people. I assumed that I would also learn some different strategies on fundraising and what has worked for some and failed for others out in the field. Outside of a Walk Now event, I had never been surrounded by so many people touched by autism. I felt comfortable and at ease with each person I met and their passion and energy was contagious.
The festivities kicked off with a chance for Autism Speaks staff and volunteers to mingle at the Light It Up Blue Reception. Geoffrey Vance, Chair of the Chicagoland Chapter greeted the crowd with a warm welcome, and that warmth continued throughout the 2 ½ day event as attendees were treated to a wide range of discussions and were introduced to the recently named President of Autism Speaks, Liz Feld.
Autism Speaks Chief Science Officer Geri Dawson gave the lecture “Making a Difference through Science” in which she discussed the great work Autism Speaks is funding in the area of science and research. In her lecture, Ms. Dawson also touched on the need for a coordinated, strategic effort focused on addressing the key barriers to diagnosis and treatment. I even had the opportunity after her lecture, to discuss with Geri what advice she would give to mothers in the autism community that feel bombarded with guilt by study after study being released showing links between autism and a wide range of environmental factors from weight of the mother to living by a highway. As she explained to me why those studies were important, an analogy came to me that I felt was appropriate… A painting is made of many strokes and in order to complete the picture of autism from the scientific perspective, many tiny brush strokes need to be taken before the whole story is revealed. Looking at the individual strokes by themselves will not allow you to fully appreciate or realize the work as a whole.
I had the distinct honor of offering a presentation on Responsible Blogging: “Fixing” Autism. The point of my discussion was to convey how we must be cautious of the words we use in trying to raise Autism Awareness. I demonstrated how even the best intended project can offend and how it is that I have used those criticisms as an opportunity to open up a dialogue with self-advocates and other adults on the spectrum. I have been privileged enough to establish some very meaningful relationships with a number of self-advocates. If we use misunderstandings as an opportunity to learn from one another, we can gain vital insight.
As I closed my presentation I introduced the group to my daughter Bianca who is my inspiration and motivation for everything from advocacy to how I look at the world. It was a very moving moment for me to be able to show others working hard for those on the spectrum, the incredible bond I have with my amazing little girl.
The conference wrapped up with the fabulous Lorri Unumb, Vice President for State Government Affairs who spoke about the great progress that has been made over the past few years in terms of autism healthcare reform on the State level and how once legislation has been passed, our focus must turn towards proper implementation. Once Governor Markell of Delaware signs the bill sitting on his desk, there will be 32 States with autism insurance reform on the books! Lorri also touched on the need to get more companies with self-funded plans to voluntarily elect to cover ABA therapy as a benefit to their employees and what the guidance meant that was issued by the US Office of Personnel Management (OPM) stating that ABA is a “medical” therapy and as such qualifies for health care coverage.
There was a lot of ground covered in those 2 ½ days, and I got the sense that the attendees left feeling inspired, educated and ready to share what they had learned with their chapters and committees back home.
Very special thanks to Liz Klug, Executive Director of the Chicagoland Chapter and the rest of her fantastic staff for hosting a wonderful conference! I am proud to be on the Board of Directors of a Chapter that is full of such talented and passionate people. We all know that it stems from the top!