Dystonia Medical Research Foundation

The would like to send a big Thank You to the generous sponsors who helped make Pittsburgh's Dystonia Zoo Day such a great event. Abbvie, Allegheny Health Systems, Merz Therapeutics, Revance Therapeutics and UPMC.

Thank you to everyone who came out yesterday to support the Pittsburgh dystonia community by attending our Dystonia Zoo Day Event. Your participation matters and your enthusiasm makes a difference in the lives of so many.

Great Zoo Day in Pittsburgh! Thanks everyone for coming out this morning.

There is a big storm rolling in!

Join us for an adventure at DMRF's Portland Dystonia Zoo Day at the Oregon Zoo on Sat, July 27. Make sure you go to the event page and register:https://bit.ly/3x7wdPo.

Attending a Dystonia Zoo Day connects you with the community while enjoying a great summer activity.

The Dystonia Medical Research Foundation (DMRF) Board of Directors and staff are deeply saddened to announce the passing of Mahlon Delong, MD, DMRF’s Scientific Director Emeritus and Honorary Lifetime Member of the Board.

Dr. Delong served as DMRF's Scientific Director for over 20 years shaping the course of its scientific program and significantly impacting dystonia research. Dr. Delong's dedication and leadership were instrumental in establishing the DMRF as a premier organization supporting dystonia research. He was particularly passionate about the Foundation’s role in engaging and supporting early stage investigators in dystonia. He championed innovative research endeavors and fostered a collaborative environment that empowered both established investigators and those new to the dystonia field.

His unwavering commitment extended far beyond research. He was a tireless advocate for patients with dystonia, and his passion for improving their lives was a constant source of inspiration for the DMRF community. We offer our heartfelt condolences to the Delong family, his friends and all who knew him His legacy will live on through his significant contributions to the field and the countless lives his work has touched.

Dr. Mahlon Delong, MD, obituary in the Atlanta-Journal Constitution: https://legcy.co/3QYP1Y4

Science is the key to helping people living with dystonia. The DMRF has been at the forefront of major research breakthroughs for almost 50 years. Please contribute to the DMRF and help support more breakthroughs today. https://bit.ly/3ZCDtws

Last Call for Tickets! Saturday is Brain Health Awareness Day at Yankee Stadium. See the Yankees vs the White Sox while supporting the DMRF. A portion of the proceeds will be donated for brain research, but hurry, the first pitch is at 1:05p. https://bit.ly/3TRlXTY

Science is the proven path to a better life for those with living with dystonia. Discovering medical breakthroughs has been the DMRF's mission for almost 50 years. Please donate to the DMRF today and support our efforts to improve lives. https://bit.ly/3ZCDtws

Take the time to celebrate all the loving moms who make our lives better.

Sunday is Mother's Day and it's a good time to remember the important roles moms play in supporting and easing the burden of dystonia.

There's still time to get your tickets to the Yankees vs. the White Sox game on Saturday, May 18 for Brain Health Awareness Day. A portion of the proceeds will be donated to the DMRF. Follow this link and enjoy a great day at Yankee Stadium https://bit.ly/4cV7YUK.

Janice and Len Nachbar along with Paula Schneider of the DMRF were recognized by Connecticut State Rep Laura Dancho (R-Stratford) for raising dystonia awareness.

They celebrated passage of House Bill 5409 marking Sept 15th as Dystonia Awareness Day in Connecticut. Thank you to Len, Janice and Paula for their tireless advocacy and to State Rep. Dancho, Stratford Mayor Laura Hoydick for this honor.

Because caregivers are so important we want to remind you to sign up for tonight's DMRF's webinar focusing specifically on caregivers. The webinar starts at 6:00pm CDT and will be presented by Natalie Hellmers, PhD, RN, ACNP-BC, Nurse Practitioner of Weill Cornell Medicine. Follow this link and register now: https://bit.ly/3Q83oss

Just a reminder that the first digital edition of Dystonia Dialogue (Spring 2024) is available online https://bit.ly/3QfzhzC . You can also sign up to receive future issues directly in your email inbox.

There's still time to register for tomorrow's DMRF Caregiver Webinar at 6:00pm CDT. Caregivers are so important and often do not think about caring for themselves. This educational webinar focuses specifically on dystonia caregivers and addresses their needs in supporting patients. Natalie Hellmers, PhD, RN, ACNP-BC, Nurse Practitioner of Weill Cornell Medicine, will be presenting. Register for this important webinar here: https://bit.ly/3Q83oss

Thank you for designating September 15th as Dystonia Awareness Day in Connecticut!

Mark your calendars for DMRF's Zoo Days. Here are the dates and cities where you can sign up to participate. For event details, visit: https://bit.ly/4589Fdn

Portland, OR July 27
Lansing, MI Aug 10
Boston Aug 25
Pittsburgh Sep 8
Indianapolis Sep 14
Brookhaven, NY Sep 14
Minneapolis Sep 21
Ft Wayne Sep 28
Toledo Sep 28
Virtual Zoo Day Oct 5

Don't forget to sign up for DMRF's Caregiver Webinar on Wednesday, May 1 at 6pm CDT. Caregivers are so important and often do not think about caring for themselves. This educational webinar focuses specifically on dystonia caregivers and addresses their needs in supporting patients. Natalie Hellmers, PhD, RN, ACNP-BC, Nurse Practitioner of Weill Cornell Medicine, will be presenting. Register for this important webinar here: https://bit.ly/3Q83oss

For medical researchers: the US Dept of Defense (DoD) Peer Reviewed Medical Research Program (PRMRP) submission process has started and many pre-proposals are due in early May. Go to the eBRAP portal: https://bit.ly/44fnkiT and start the process.

Just a quick reminder of the Brain Health Awareness Day on Saturday, May 18 at Yankee Stadium. A portion of the proceeds will go to the DMRF. Spend the afternoon enjoying a baseball game and supporting dystonia research and brain health. Use this link and get your tickets to see the Yankees vs. the White Sox. https://bit.ly/4cV7YUK

Today is Earth Day and the DMRF encourages you to access and subscribe to our magazine, Dystonia Dialogue, electronically. It's a great way to honor the spirit of the day and save some trees. Follow this link: https://dystonia-foundation.org/dystonia-dialogue/ to read the latest issue and to subscribe.

We have a winner in the Zoo Days T-Shirt and this year's shirt will be Royal Blue! See the dates and cities where Zoo Days are happening here: https://dystonia-foundation.org/get-involved/events/. Thanks to everyone for helping get this year's Dystonia Zoo Days off to a great start!

Dystonia caregivers are so important and often do not think about caring for themselves. Learn about the importance of caring for the caregivers and sign up for the DMRF's Caregiver Webinar on Friday, May 1 at 6pm CDT. This educational webinar focuses specifically on dystonia caregivers and addresses their needs in supporting patients. Natalie Hellmers, PhD, RN, ACNP-BC, Nurse Practitioner of Weill Cornell Medicine, will be presenting. Register for this important webinar here: https://bit.ly/3Q83oss

Join us in welcoming Chris Von Der Ahe to the Board of Directors of the DMRF. Chris is a Managing Partner at Korn Ferry, a global talent consulting firm, and he has a passion for dystonia research, education and support.

More images and news on Jon Davis' campaign through Portugal. Jon is riding more than 4k miles this year to raise awareness and funding for dystonia medical research. Follow Jon on his journey and donate toward his cause. https://bit.ly/3YqyTRt

Dystonia Zoo Days are back for 2024. These family-friendly gathers promote dystonia awareness, connect the community and support the work of the DMRF.

This year's events will happen from June through October.
But first, help us select the color for this year's T-shirt. Vote for:
1. Lime Green
2. Irish Green
3. Royal Blue
4. Sport Grey

Vote for your color by typing the number in the comments below.

For more information or to register for a Zoo Day event near you, or to organize a DIY event in your community, contact the DMRF at: [email protected].

DMRF Board Member Jon Davis and his campaign raised more than $22,000 for the DMRF in 2023. He’s back at the wheel, riding through Portugal on his quest to bike more than 4,000 miles again in 2024 and to raise $20,000. Learn more at: https://bit.ly/3YqyTRt.

There's still time to register for tonight's DMRF webinar on Merz's patient affordability options for accessing Xeomin. Learn how you can benefit from patient savings and patient affordability programs as well as have your important questions answered. This webinar with NOT be recorded and is only presented as a live event.

Follow this link and register today: https://bit.ly/43GfMFU.

Dystonia Medical Research Foundation Webinar. Wednesday, April 2 at 7:00pm EDT.

Don't forget to register for DMRF's webinar on Merz's patient affordability options for accessing Xeomin. If you're being treated with Xeomin this webinar may have important information on how you can utilize your patient savings or patient assistance programs.

The Webinar is tomorrow evening, Wednesday, April 3 starting at 7:00p EDT. This event will NOT be recorded and will only be presented as a live presentation.

Follow this link and register today: https://bit.ly/43GfMFU.