“New & Innovative Ways to Fundraise”: An Interview with Autism Speaks

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Image courtesy of Autism Speaks

With the influence of the Internet in today’s world, online fundraising is essential to the success of many organizations. When a person makes a donation with a credit card, some of that money must go towards transaction fees – it’s an unfortunate reality of the current financial system. That’s why some organizations are looking towards Bitcoin. Due to the lack of transaction fees, giving with Bitcoin allows the most money to directly reach the cause.

For this reason, Autism Speaks, the leading organization in autism research and advocacy, recently started accepting Bitcoin donations through BitPay.

Autism Speaks truly realizes the power of the Internet. In addition to their acceptance of Bitcoin, they have partnered with Google to advocate towards “open science”. MSSNG is a project that aims to create a database of DNA sequences of individuals with autism and their family members, available to researchers everywhere. All of the genomic data would be accessible on the Google Cloud Platform, helping to shape the future directions of autism research.

Alec Elbert, the Chief Strategy and Development Officer, spoke to me about how Bitcoin could help Autism Speaks raise funds for MSSNG, as well as many other programs and initiatives.

Emily Braun: I would love to hear about the history of Autism Speaks, as well as a brief overview of what the organization does.

Alec Elbert: This is the 10-year anniversary of Autism Speaks. Our cofounders, Bob & Suzanne Wright, have a grandchild named Christian who was diagnosed with autism in 2004. Bob is the former chairman of GE and of NBC, but Christian’s journey got them involved in this area, and they started Autism Speaks [in 2005]. There really weren’t too many organizations focused on autism at the time, and ten years ago, the prevalence rates were much lower than they are now. The CDC now estimates that 1 in 68 children are diagnosed with autism, and 1 out of 42 boys.

So our focus has been four key areas, primarily on the research & science side; the majority of the $550 million we’ve invested in the autism space has gone into research. We also focus on family services, so everything from the 100 Day Kit, a tool kit for parents when a child is first diagnosed with autism, to things like the Autism Response Team, a phone number and an email address for anyone with questions, issues, or problems. We also focus heavily on advocacy, as well as awareness. So on the advocacy front, that’s making sure every state has a mandate to cover autism, as well as things like ABA (Applied Behavior Analysis) therapy, insurance policies, housing initiatives, and employment.

Braun: What is your role in the organization, and how did you first get involved?

Elbert: I’m the Chief Strategy and Development Officer, and I started with the organization about three years ago. In the past, I was involved in sports and television. Although I don’t have a direct, personal connection with autism, once I dug into the cause, I really saw how many people are impacted – and the fact that, in some way, shape, or form, everybody is impacted by autism.

Braun: And what has been the most rewarding aspect of your three years working for Autism Speaks?

Elbert: You know, I think that it’s every conversation with the parents. We’re a very grassroots organization, so at the walks, I’ve met so many amazing parents, who are not only the champions and warriors for our cause but are also just some of the best people I’ve ever met. Like I said, I don’t have a direct connection, but when I hear people talk about [autism], when I hear their openness and willingness to start the conversation and to make change, I find it amazing. Hearing how differently people look at autism now versus ten years ago, as well as hearing people thank us for our support, is by far the best.

Braun: I know there’s a walk coming up in Brooklyn, in Prospect Park on July 19. How often does Autism Speaks host these walks?

Elbert: There’s between 90 and 100 walks around the country, and they vary in the size of the community dramatically. So, for example, we have a walk in Los Angeles that attracts tens of thousands of people, and then we have much smaller community walks. This is the second year of the Brooklyn walk. It’s a big fundraising event, but it’s also all about bringing our community together, giving our families the opportunity to meet local service providers and meet other families and share stories. They call [autism] the “snowflake disorder”. When you’ve met one person with autism, you’ve met one person with autism. It varies so dramatically from person to person. It’s important to give our community the opportunity to get together and talk about what’s working, what’s not working, who they can go to for support, how housing is developing… All of those issues are critical.

Braun: Are there any future directions in the organization or in autism research in general that you’re particularly excited about?

Elbert: Absolutely! We know that autism has a genetic component, as well as an environmental component. Our Chief Science Officer, Rob Ring, always says, “All roads lead to the genome.” We have a big project right now that we call our MSSNG Project. It’s focused on discovering the future in autism through what we call “open science”. We’re partnering with Google, as well as the SickKids Hospital in Toronto, to hold genome sequencing for over ten thousand individuals, both individuals with autism and family members without autism. We hope to understand what is going on from a genetic level, so that we can understand the various forms of autism better, as well as develop personalized treatments.

We couldn’t be doing a project like this without the support of Google. They will actually host all of this genetic information on the Google Cloud, and any qualified researcher anywhere in the world will have access to this database. With other databases like this, one research institution holds it, and researchers can’t really get to that information if they’re in another part of the country or not affiliated with that institution. Our database is open science – anybody, through the power of Google Cloud, will be able to access this database. We hope to get the best and brightest minds working on autism, helping us find more of the causes and potential treatments.

Braun: Thank you for sharing that! It’s really exciting to me too! On a slightly different subject, what’s also exciting to me is that Autism Speaks is accepting Bitcoin for donations, as you’ve recently partnered with BitPay. How did the organization first hear about Bitcoin, and what influenced the decision to accept the currency?

Elbert: We’re always looking for new and innovative ways to fundraise, and I think that online fundraising is an area that everybody talks about. Everybody feels strongly that it is the future of how the younger generation, the millennials, will be donating to organizations. But there’s not really many easy ways to make these donations; it’s not as easy as buying something online. Some of my staff reached out to me and said, “Hey, we talked to BitPay about accepting donations in bitcoins.”

And one of the best things about that is that there are no fees associated with the transaction. For us, a significant goal is always to get the most dollars directly into our program, to improve the lives of those impacted by autism. Bitcoin allows us to do that, because there are no transaction fees. If you’re paying with a credit card, there will always be some level of a transaction fee – it’s the reality of the world we live in. Trying [Bitcoin] out and getting in early gives us the opportunity to see how this will work, as well as the opportunity to get as much of a donor’s dollars as possible directly to the program.

Braun: Have you had a lot of people donate with bitcoins?

Elbert: We’ve started to. We launched at the end of April, and so far, we’ve had about $300 of donations. Most of these donations are small levels, five to fifteen dollars. It’s encouraging, because we haven’t done a lot of promotion of it yet – it’s just listed as one of our ways to give online. So we’re testing the waters now, and it’ll be very interesting to think about ways to promote this a little bit more now that we see that it’s working. We’re looking at who is giving through Bitcoin and at what levels, and how we can build a campaign around that to maximize the potential.

Braun: Have you ever personally used bitcoins for anything?

Elbert: Personally, I have not. Actually, when my folks approached me, I had recently seen the Morgan Spurlock special on CNN about Bitcoin, and it was intriguing. I think Bitcoin is the type of thing that you need to kind of understand the parameters of how it’s actually working, everything from the origin to all of the various aspects of the value chain. And it’s very interesting to me.

The Brooklyn Walk Now for Autism Speaks is this weekend in Prospect Park. For more information or to register for the walk, check out the walk’s website here.

To donate to Autism Speaks with Bitcoin, click here!

– Emily Braun

All images courtesy of Autism Speaks.

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