2020 FunDrive Moves Online and Launches with Matching Gift Opportunity!

We can’t gather in-person this year due to the challenges of COVID-19, but that doesn’t mean we can’t have fun, socialize, and raise awareness about dystonia while we raise money to support our programs for 2020! Watch our social media pages and blog for upcoming events, social meet-ups, and giving opportunities.

To kick off the 2020 FunDrive, The Kevin and Sandra Hutton Foundation agreed to match up to $25,000 in gifts from new donors during November and December. As Dr. Keener and Keith challenged us last year, we NEED to increase awareness about dystonia in our community.

Will you share our message with your personal network this year? Sharing our story is the first step in raising awareness and donations! You can email your personal or professional network, share our social media pages, or reach out to people in person. Please help us to take full advantage of this $25,000 matching gift opportunity! And while you are sharing our story, please remember to make your own donation to support our 2020 FunDrive! If you don’t remember what happened last year or couldn’t join us, here’s a refresher…

The 2019 FunDrive was a Night of Fundraising, Entertainment, Education, and a Challenge to Raise Awareness 

The Automobile Driving Museum was filled with laughter and conversation last December as our friends, family, and supporters gathered for the 2nd Annual Down with Dystonia FunDrive. Guests enjoyed classic car tours, red carpet photos, entertainment generously donated by magician Alex Iverson and Derek the Mime, and bidding on a wide array of silent auction items donated by individuals and businesses to help us raise funds to support 2020 programming. 

After dinner, keynote presenter Dr. Adrienne Keener from UCLA Neurology provided insights into current medical research and treatments for dystonia. Dr. Keener helped us define dystonia, understand how doctors diagnose it, and visualize the typical patient’s journey to diagnosis. She shared how Devin’s treatment journey inspired her current research into sensory motor integration tricks for improving speech for patients with dystonia. Dr. Keener concluded with brief comments about the role of genetics in dystonia. There are currently 25 different genes identified that have a role in causing dystonia, and these genes are only present in 5% of people who have been diagnosed with the condition.

Keith Burke from MERZ Neurosciences and Down with Dystonia Board Member wrapped up the evening by challenging all of us to actively work towards increasing awareness. Keith provided us with a variety of ways to accomplish this:

  • Work together to exponentially increase our impact: Down with Dystonia will work in cooperation with medical research and other organizations that are already working in this field. We have a common goal and aren’t competing! 
  • Help patients with dystonia define their “new normal”: Recognize that people with dystonia deserve to be treated as normal, just like you and I. They need to be surrounded by a community that supports them in order to make this possible. Every patient deserves a care group!
  • Paradigm shift: We need to return to a system where doctors and patients work together to make the best decisions for people living with dystonia, rather than the current system of insurance companies determining which treatment plans are acceptable.
  • Research: There is not one answer to dystonia. There is currently a variety of symptom relief, but there is no cure. Our goal is a combination of finding more effective symptom relief options and finding a cure.

The 2019 FunDrive was an inspirational evening. We are so thankful to all of our sponsors who made the event possible:

merz therapeutics logo

Thank you to our beverage sponsors: