I have DYT6, but I do not let that keep me from doing what I want! Bentley has been such a blessing. He helps me with my brace I have for kyphosis and supports me when I am not feeling the best!

Throughout February support Bentley and the other pets registered for DMRF’s Dystonia Pet Palooza by making a donation today.


Marilynne Herbert

Donation Goal

$25 of $100 raised


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Pet Palooza – Bentley

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Donation Total: $5.00

This Veterans Day, the Dystonia Medical Research Foundation salutes all who have served. Thank you.

Military personnel who have experienced traumatic brain injury or who were treated with certain medications may be at an increased risk of dystonia. For more information on dystonia, visit dystonia-foundation.org

2022 marks the 25th anniversary of the identification of the DYT1/TOR1A gene responsible for early onset torsion dystonia. Join us for a webinar about the impact on dystonia research and clinical care with our panel of experts, including two investigators responsible for this major research milestone.

Guest speakers are Xandra Breakefield, PhD, Laurie Ozelius, PhD, and Neepa Patel, MD. The program will be moderated by John Downey, DMRF Board of Directors.

There will be time for Q&A with speakers. The webinar will be recorded and made available for viewing after the live broadcast. Don’t miss this extraordinary conversation. See link in bio to sign up.
#dystonia #dystoniaawareness #dystoniaresearch #cervicaldystonia #blepharospasm #tardivedyskinesias #dyt1 #tor1a #runnersdystonia #curedystonia #dystoniacoalition #neurology #neuroscience #neurosurgery #deepbrainstimulation #dbs #neuromodulation #research

Curious about whether you might benefit from physical therapy? Have you been dissatisfied with past experiences seeking physical therapy for dystonia? Join us for a free webinar “Dystonia & Physical Therapy” to discuss the role of physical therapy in the dystonia treatment plan. Guest speaker is renowned expert and longtime friend to DMRF Mary Hudson-McKinney, PT, MS, DPT, NCS of Western University of Health Sciences. Program will take place Wednesday, November 2, 2022 at 7:00PM Eastern time/6:00PM Central time/4:00PM Pacific time. See link in bio to sign up. ...

The next Dystonia Dialogue will be hitting mailboxes soon. Read exciting research updates on non-invasive neuromodulation therapies, “smarter” deep brain stimulation devices, and a pilot program to add yoga exercises to a treatment plan for cervical dystonia. You will also find updates and pics from DMRF Dystonia Zoo Days and inspiring personal stories. Are you a subscriber? See link in bio to request a complimentary copy of the newsletter or become a DMRF member to enjoy a year’s subscription. ...

Thank you to our DMRF support groups across the country that hosted “Dystonia Strong” events to help the community re-connect after the social isolation of the Covid-19 pandemic. Dystonia support groups are invaluable sources of information, understanding, validation, and friendship. Support groups that participated include the Southeast Pennsylvania Support Group led by Raman Patel, the Fairfield, CA Support Group led by Carol Flynn, the North Carolina Support Group led by Crystal Edmonds, and the Metro Detroit Support Group led by Jules Watkins. With input from the community, DMRF also launched a line of Dystonia Strong awareness merchandise including a baseball style shirt, yard flag, notecards, magnets, and more. To connect with DMRF support groups (many of which are meeting virtually by video conference and all are welcome!) and online groups see link in bio. ...

The DMRF is pleased to announce the 2023 Clinical Fellowship program. This two-year program will support the training of movement disorder physicians with a focus on dystonia. $65,000 will be awarded each year for up to two years and applications are due December 12, 2022. See link in bio. ...

We must express our immense gratitude to longtime DMRF supporter Linda Davis and Niel Marturiello for organizing the “Fight for a Cure—Dystonia Awareness” basket raffle to benefit DMRF in September.

Legislator Dominick Thorne presented Linda with a Certificate of Merit from Suffolk County Legislature for her dystonia awareness efforts. Dean Murray presented her with a Dystonia Awareness Proclamation on behalf of Senator Alexis Weik. Great work!

The event was sponsored by SSG Keith Bishop VFW Hall Post 2937. See link in bio to read more about recent DMRF events.
#dystonia #dystoniaawarenessmonth #dystoniaresearch #musiciansdystonia #focaldystonia #handdystonia #runnersdystonia #cervicaldystonia #blepharospasm #dyt1 #tardivedyskinesia #botox #dysport #myobloc #xeomin #deepbrainstimulation #doctor #depression #neuroplasticity #parkinsons #tremor

THANK YOU to DMRF Support Leaders Sarah Ernstberger and Sunshine Fox for organizing the Indy Hunt for a Cure for Dystonia which took place last month in Garfield Park, Indianapolis. The event raised dystonia awareness and funds in support of the DMRF mission. Terrific work! See link in bio to read more. ...

Dystonia is a neurological disorder that affects the physical body, but the impact goes far deeper. Individuals diagnosed with dystonia commonly experience symptoms that affect more than how the body moves. DMRF is offering an anonymous survey to help us better understand the mental health needs and concerns within the dystonia community. Please see link in bio to share your feedback.
#dystonia #dystoniaawarenessmonth #dystoniaresearch #musiciansdystonia #focaldystonia #handdystonia #runnersdystonia #cervicaldystonia #blepharospasm #dyt1 #tardivedyskinesia #deepbrainstimulation #doctor #wellness #emotionalhealth #mentalhealth #anxiety #depression #neuroplasticity #parkinsons #tremor

Thanks to YOUR support, Dystonia Zoo Days have now cumulatively raised over $2.2 million to fund dystonia research and the DMRF mission. Donations raised through this year’s in-person and virtual Dystonia Zoo Days will immediately be put to use to make a difference in the lives of individuals with dystonia and their families.

We appreciate everyone who tuned in to yesterday's Virtual Dystonia Zoo Day, with participants representing all 50 states and beyond!

We are grateful to our inspiring team leaders, generous sponsors, and the moderators and speakers who made the program so special.

#letszoothis #wezooedthis

Thank you to Merz Therapeutics for returning as a Dystonia Zoo Day National Sponsor! #letsZOOthis #dystoniazooday ...

Thank you to Ipsen Biopharmaceuticals for returning as a Dystonia Zoo Day National Sponsor! #letsZOOthis #dystoniazooday ...

Thank you to Allergan, an AbbVie Company for returning as a Dystonia Zoo Day National Sponsor! #letsZOOthis #dystoniazooday ...

You ready? #letsZOOthis #DystoniaZooDay ...

Today's the day! Please join us for the 3rd Virtual Dystonia Zoo Day to benefit the Dystonia Medical Research Foundation beginning at 12pm ET/11am CT/9am PT (USA). Sign up is free and you can support the event by making a donation. A limited number of t-shirts are available.

See link in bio. You do not need a log in link or code to participate.

Schedule of Activities
Times are in Central Time (USA).

🐾11:00 AM - Welcome Party Animals
With DMRF President Mark Rudolph, Executive Director Janet Hieshetter, & Special Guests

🐾11:10 AM - On the Prowl: Zookeeper Chat
With Paige Kaiser, Kristin Cinglie, and Toledo Zoo & Aquarium

🐾11:40 AM - Spread & Stretch Your Wings: Yoga Break
With DMRF Support Leader Martha Murphy, DMRF Medical & Scientific Advisory Council Member Jean-Francois Daneault, PhD, & Aurora James-Palmer, DPT, PhD, RYT-200

🐾12:00 PM - The World is Your Oyster: Doing What You Love
With DMRF Board Member Billy McLaughlin, Sheri Grube, & Sydney Peterson

🐾12:30 PM - Outfoxing Dystonia: Research Q&A
With DMRF Support Leaders Brad & Shanna Schmitt, Brian Berman, MD, & Noreen Bukhari-Parlakturk, MD, PhD

🐾12:50 PM - Closing Remarks
DMRF President Mark Rudolph & Executive Director Janet Hieshetter

100% of donations will be matched! #letsZOOthis #dystoniazooday

Getting closer! With your help we will reach our goal. All donations made by the 3rd Virtual Dystonia Zoo Day & Closing Ceremony on Saturday, October 8th will be matched up to $100,000.

Help us get to the maximum match. Your gift will be doubled and support dystonia research toward a cure and resources for affected individuals and families.

See the link in bio to give. Thank you!
#letszoothis #dystonia #dystoniaawareness #dystoniaresearch #dystoniazooday #virtualdystoniazooday #cervicaldystonia #blepharospasm #dyt1 #tardivedyskinesia #runnersdystonia #focaldystonia #botox #dysport #xeomin #curedystonia #zoo #zooanimals #wildlife #nature

As a testament to the tireless work of Dystonia Advocacy Network volunteers, H.Res.1413 – “Expressing support for designation of September 2022 as ‘National Dystonia Awareness Month’ and raising awareness and understanding of the disorder of dystonia” was entered into the Congressional Record on September 30th.

The resolution to recognize Dystonia Awareness Month was championed by Rep. Christopher Smith of New Jersey and Rep. Jan Schakowsky of Illinois.

Congratulations to our advocates who have raised awareness of dystonia with Members of Congress for making this possible! See the DMRF website to read the full resolution.

The DMRF is pleased to share our latest grant announcement of an award provided to Leighton Hinkley, PhD of University of California, San Francisco. The project is titled, “Personalized Functional Neuromodulation of Common Deficits in Focal Dystonias.”

The goal of this investigation is to adopt a personalized approach for applying rTMS non-invasive brain stimulation to treat focal dystonia. Dr. Hinkley hypothesizes that the specific regions of the brain that act as dystonia “hotspots” for stimulation will vary in each patient, true to the nature of dystonia being different in every individual. This project is supported by the Cure Dystonia Now Fund.

See link in bio to read more about the project.