Oct
28

Dystonia Awareness Month

Dystonia Awareness Month

  • Thank you to everyone who helped spread awareness this September by sharing our social media posts, telling friends and family about dystonia, and reaching out to encourage people living with dystonia.
  • Although Dystonia Awareness Month is over, you can spread awareness all year round! Stay engaged with Down with Dystonia and other dystonia organizations on social media, share our content, and spread awareness in your community!
  • Join us for the Dance with Dystonia challenge beginning November 1st. Help raise awareness about dystonia and funds to support Down with Dystonia programs in 2022!

September is Over, but Our Mission Continues

Image of blue ribbon with words "Keep Calm and support Dystonia Awareness"In the United States, approximately 250,000 people have been diagnosed with dystonia. This makes dystonia the third most prevalent movement disorder. However, patients and medical professionals agree that dystonia awareness is significantly lacking compared to other movement disorders, such as Parkinson’s disease. Raising awareness for dystonia is crucial to furthering medical research and finding better treatments as we eventually seek a cure.

Art Kessler, the President of the Dystonia Medical Research Foundation, recently said “individuals often suffer years without proper treatment, and this can have devastating effects on employment, schooling, and overall quality of life. Delayed diagnosis also prevents people from having access to the information they need to make informed treatment decisions and peer support from others who understand the challenges of living with dystonia.” An accurate diagnosis often takes years because there is a lack of awareness about dystonia in the medical community and in the general public. 

Dystonia awareness month occurs in September every year – a month dedicated to spreading awareness about dystonia beyond medical specialists and people diagnosed with the condition. Our goal is for the majority of adults in our communities to become as aware dystonia and its symptoms as they are of Parkinson’s and Huntington’s diseases. When conditions and symptoms become familiar, people who begin experiencing symptoms are more likely to seek treatment and receive an accurate medical diagnosis. Familiarity also makes life easier for people living with dystonia. It becomes easier to find a network of people living a similar experience, the sense of “otherness” is diminished, and the communities where we live become more inclusive and accommodating. If you want to learn more about how you can help spread awareness, check out the social media channels for Down with Dystonia and other dystonia nonprofit organizations. There was a ton of great content posted throughout the month, and you can still spread awareness by sharing the posts with your social networks.

September is over, but dystonia awareness will continue all year! Help us reach spread the word by following dystonia nonprofit social channels, liking and sharing our posts, and connecting with Down with Dystonia as we launch a variety of community awareness campaigns in 2022. A few of the campaigns that will continue to spread awareness and put on activities throughout the year include:

  • The Dance with Dystonia Challenge: Launching November 1, this challenge asks you to take a video of yourself dancing to the music of your choice. Dress up in a costume. Be weird! Get funky! Be you! Share your video to social media and tag/challenge at least three of your friends. When you post the video, make a donation to Down with Dystonia to support programs for people living with dystonia and awareness campaigns in 2022.
  • Reach Out, Reach All: This campaign focuses on bringing the dystonia community together through a variety of activities including film, animation, podcasts and webinars.
  • Dystonia Moves Me: The Dystonia Medical Research Foundation’s annual awareness campaign encourages volunteers to promote dystonia locally within their communities and on social media.
  • #EscapeDystonia: The hashtag campaign was initiated by Dystonia Europe for dystonia awareness month 2021, encouraging those with dystonia to speak out about what they do to feel better and engage with the campaign through social media.
Nov
30

Down with Dystonia Launches Medical Advisory Board

At Down with Dystonia, our mission is to support, educate, and empower people living with dystonia and their families while raising awareness about this third most common movement disorder. In order to make this mission a reality, our organization must stay current as medical research moves forward.

The people on our Board of Directors are wonderful advocates. They are people who live with dystonia, their family members, and community members who support them. But they are not medical experts. They don’t spend their days conducting research studies to determine how the brain functions, working with patients living with movement disorders, navigating NIH and FDA protocols, or reading the latest medical journals. Thankfully, someone who spends her days doing these things and who has a long history with our organization’s founder has joined us as Down with Dystonia’s first Medical Advisory Board Member.

2019 FunDrive Keynote Speaker Dr. Adrienne Keener to be First Medical Advisory Board Member

Dr. Adrienne Keener, UCLA Neurology

Dr. Adrienne Keener is a board-certified neurologist and Movement Disorders specialist at UCLA and the West Los Angeles VA PADRECC (Parkinson’s Disease Research Education and Clinical Center). She received her medical degree from the USC Keck School of Medicine, completed her Neurology residency training and Movement Disorders fellowship at UCLA before joining the UCLA faculty in 2016. Dr. Keener participates in clinical research and patient care. She is interested in interdisciplinary treatment approaches for Movement Disorders, including deep brain stimulation, botulinum toxin injection, and rehabilitation therapies. Dr. Keener is also passionate about medical education, and serves as the Associate Program Director of the UCLA Neurology Residency Program. 

During her fellowship at UCLA, Dr. Keener began treating Down with Dystonia Founder and Executive Director Devin McClernan. He shared his dystonia journey with her, and they developed a doctor patient relationship that has continued to this day. As Devin developed the nonprofit organization, Dr. Keener provided advice and guidance in developing awareness campaigns for the lay public and for medical professionals. 

After speaking at the 2019 FunDrive, Dr. Keener and the Board of Directors discussed formalizing a Medical Advisory Board at Down with Dystonia. The Medical Advisory Board will include neurologists and researchers specializing in movement disorders. They will advise the Board on the strategic direction of the organization, review content shared on the website treatment pages, and recommend publicly available research studies to share on the website and social media pages. Our Medical Advisory Board will consists of experts in their field who are passionate about helping us to bring down dystonia by:

  • Supporting, educating, and empowering people living with dystonia and their families: We need your advice and knowledge in order to provide the most up to date information about diagnostic processes, treatments, and research programs on our website and through our social media.
  • Raising awareness: We are developing education campaigns for the public and medical professionals. These will need to be updated consistently throughout our journey.
  • Providing connections: Networking with hospital systems, pharmaceutical companies, universities, and researchers is critical to finding more effective treatments and, ultimately, finding a cure for dystonia. 

We are happy to have Dr. Keener formally join the Down with Dystonia team, and we look forward to growing the Medical Advisory Board in 2021!

Nov
18

Down with Dystonia FunDrive 2020 Shifts Gears After Success in 2019

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 2021! Watch our social media pages and blog for upcoming events, social meet-ups, and giving opportunities.
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Dec
05

Join Us at the 2nd Annual FunDrive

We know December is a busy month for many of you, so we are sending our invitation out early…please make plans to join us on December 15th to raise funds for Down With Dystonia while enjoying great food and touring the Automobile Driving Museum at the 2nd Annual FunDrive. At this year’s event, guests will have the opportunity to tour and sit in some of the museum’s 130+ vintage, antique, and muscle cars in addition to enjoying a hors d’oeuvres, entertainment, a buffet dinner, and an open bar.

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Oct
19

Planning your giving season to target generational giving patterns

In April, Blackbaud Institute for Philanthropic Impact released their study on the Next Generation of American Giving detailing the giving habits of each generation from the Greatest Generation (they call them “Matures”) to Generation Z. This was the third in a series of studies that started in 2010 (studies completed in 2010, 2013, and 2018). Researchers surveyed 1,339 donors from a group controlled to be a nationally-projectable sample of donors.

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Mar
20

The Visualization of a Dream

Honoring Jim Yuransky and his contributions to Down with Dystonia

Close your eyes and imagine a cool natural light lavished space, the relaxing San Diego patio of the artist and accomplished visualization expert, Jim Yuransky. Breathing in, you smell brilliantly bright fresh paint drying on canvases hung at eye level in every direction. It’s easy to stare deeply into his geometric works, finished and in-progress, and find yourself visualizing a new idyllic place altogether. That’s kind of the point. This is the place where Down with Dystonia, and much more, came to be.

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Jan
02

Huntington Beach Fundraiser Ties Bow on 2018

Gracious family contributor hosts inaugural Down with Dystonia fundraiser

Last month, the 56th annual Huntington Beach Boat Parade provided a colorful backdrop to the first Down with Dystonia fundraiser, a gathering ten years in the making. As dazzling displays of light and sound drifted across the glassy water outside, displays of love and generosity created an unmistakable buzz of positive energy inside. Welcoming nearly seventy guests, the event wrapped a year in which great progress was made and ambitious goals were set.

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Nov
26

Living with Dystonia: Social Security Benefits

Tips on navigating federal disability benefits for dystonia patients

As an organization, one of our key advocacy targets is the lack of explicit dystonia listing in our nation’s Social Security Disability benefits program. The debilitating nature of moderate to severe dystonic symptoms, without a doubt, can negatively impact a person’s ability to work, let alone their ability to function day-to-day.

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