We sat down with Matt Burnell to get his answers on what Cavernous Malformation is, what the inspiration was behind the documentary, and how people can help the Alliance to Cure Cavernous Malformation towards their goal of curing this illness. Check out his answers below!
Questions and Answers
What is Cavernous Malformation?
Cavernous Malformation (also referred to as cavernomas, cavernous angiomas, cavernous hemangiomas or intracranial vascular malformations) is clusters of abnormal blood vessels located in the brain. These blood vessel malformations can also occur in the spinal cord, affecting the brain or nerves of the skull.
About 1 in 500 people have at least one cavernous malformation in their brain. Many people go without experiencing symptoms. However, those that do experience systems include seizures, followed by hemorrhage and neurologic deficits (ie. blurred vision and weakness), among other systems.
This illness is hereditary in 20% of people who have it and those with the hereditary form of the illness will likely have more than one cavernous malformation over time.
According to the Alliance to Cure Cavernous Malformation, “brain or spinal surgery is the only current treatment for the illness, but there are a number of medications under development to strengthen the vessels and stop more cavernous malformations (cavernomas) from forming.”
How long have you been involved with the Alliance to Cure Cavernous Malformation?
This will be my second year working with the alliance. The first year we were involved in their virtual program. We edited and presented their event completely online with live streaming.
Why are you passionate about this organization?
They are so close to a cure. They only need funding and clinical trials. It’s very rewarding to be involved with an organization that is so close to changing the lives of so many people and generations to come.
In addition, from the top down, the organization is filled with wonderful and humble people. It’s refreshing to work with organizations that are willing to work together with us at ClickBid and take our advice and counsel.
What was the inspiration behind making this documentary?
I really wanted to show an organization how valuable it can be to tell stories as a way to fundraise. Documentaries engage donors, especially brand new donors, emotionally. You can walk with a family or individual through a challenge that the organization aims to help. I also wanted to show how accessible documentaries can be. We produced Eloquent for less than $7,000.
Why is the documentary called Eloquent?
When someone experiences a Cavernous Malformation, the location is very important. Eloquent areas of the brain and spine are filled with important functions for the body. This makes it difficult to surgically remove a malformation. It’s a paradox because you would normally think of eloquent as a good thing, a beautiful thing, but in the case of Cavernous Malformations, it is not.
What role did you/ClickBid play in making this documentary?
We produced the film with the Alliance to Cure Cavernous Malformation. Our experience in fundraising and filmmaking shaped the development of the film.
What is the most memorable part of making this documentary?
Meeting and capturing the stories of incredible people. Seeing what they have lived through is amazing. Hoping that this project raises awareness and money to help them make life easier is something I’ll never forget.
When will the documentary be available to view?
You can watch the trailer on YouTube now. The full documentary will be available in the middle of July of 2022.
How can someone support the Alliance to Cure Cavernous Malformation?
To learn more or to support the Alliance to Cure Cavernous Malformation, you can go to cureccm.cbo.io and offer a donation. You’re also invited to participate in upcoming events, join the CCM directory, and volunteer for clinical trials. This all helps get closer to a cure.
Working Together Towards Finding a Cure
At ClickBid, we are passionate about enabling organizations to thrive and are dedicated to intimately understanding our customers’ missions. That’s why we’re honored to partner with the Alliance to Cure Cavernous Malformation as we work together towards finding a cure.
For more information about the Alliance to Cure Cavernous Malformation, click here.