Thanks and Congrats to Ali London for NY Times Op Ed

Thanks and congratulations to Allison London for her excellent Op Ed in the May 19 New York Times entitled “Disease and the Public Eye” where she discusses her experience with dystonia and thoughts on disease awareness. We join with others in expressing our gratitude to Ali for sharing her story so that others might learn more about dystonia and how it changes the lives of those affected. It takes courage and commitment to open yourself up like this. Thank you to Ali and everyone who has shared their dystonia stories. You are our "celebrities" and we thank you!

In the photo: Allison London is one of three recipients of the DMRF’s Douglas Kramer Young Advocate Award announced earlier this year. Pictured left to right: Melissa Phelps, Nicole Dean, Allison London.

Gratitude for Our Dystonia Advocates

Many thanks to the nearly 100 advocates who traveled to Washington, DC this week to make sure dystonia remains a priority to our legislators. Words cannot express the gratitude we have for all of you – for sharing your stories, navigating the maze-like halls of the Congressional office buildings, and making sure key Congressional staff persons know about dystonia and how they can help. The DMRF is proud to be a part of the Dystonia Advocacy Network, joining with the Benign Essential Blepharospasm Research Foundation, the National Spasmodic Dysphonia Association, the National Spasmodic Torticollis Association, and ST/Dystonia in hosting this event, but just as importantly, working throughout the year to keep dystonia on the minds of our Congressional leaders.

Congratulations to our Douglas Kramer Advocacy Award recipients, pictured below. From left to right, we applaud Melissa Phelps, Nicole Dean, and Allison London.. We look forward to working with these dedicated, young advocates in continuing to push the dystonia legislative agenda forward.

A special thank you to all of our advocates for your work these past few days. Great job, everyone!

Join Us for Dystonia Advocacy Day

It may feel in some areas of the country that spring will never come this year.  So many are dealing with mounds of snow and cold temperatures – it’s hard to be able to overlook all of that and think about any spring activity.  We hope you will be able to look beyond all that snow and look to an exciting spring program: consider joining with other dystonia advocates to educate Members of Congress about dystonia and ask them to help us meet the needs of this community.

Dystonia Advocacy Day is just one of the many things we do with our advocacy program every year.  It happens every spring in Washington, DC. Because of the many tireless advocates that have participated in years past—and the added efforts of dedicated advocates throughout the year—the dystonia community has had researchers funded through the Department of Defense Peer Review Medical Research Program, allowed for easier access to all FDA approved treatments for dystonia, and joined with other organizations in calling for increased funding for the National Institutes of Health and for appropriate reimbursement for physicians.

The dates this year are April 30 - May 1st.  We will do an orientation for new advocates on April 30 and give you an overview of what to expect. Then there is a briefing for all advocates later that afternoon.  The day is topped off with a dinner—giving you a chance to meet with other advocates.  People are put into teams so no one has to go into a meeting alone.  All advocates are sent materials in advance,  and we prepare packets filled with specific information on what we are asked Members of Congress to support.  You don't have to worry about becoming a legislative expert –it’s your story that makes the difference and makes dystonia real for legislators and their staff.

If you are interested, please consider joining us.  Once we receive your registration, you will get an email confirming that you are registered.  We will ask you what hotel nights you need, if you have dietary restrictions, etc.  We will make your hotel reservations and send you your hotel confirmation number.  You will be sent materials in advance of arriving in Washington, DC to review so you will be prepared for the orientation and briefing.

We hope you will be able to participate this year.  It is such an important activity.  Click here to register for Dystonia Advocacy Day.

If you have questions, please contact the office at dystonia@dystonia-foundation.org or 312-755-0198.

Dipraglurant Shows Promise for PDD

We congratulate Addex, Dr. Ellen Hess, and BSDPF on their exciting recent news about the potential of dipraglurant for individuals with paroxysmal dystonia and dyskinesias (PDD).

The promise this holds for those who are impacted by this rare dystonia is to be celebrated by everyone in the dystonia community.  What we can learn from this recent good news may hold promise for continued progress in developing other treatments for other forms of dystonia.

Congratulations and thank you to all who have been working on this over the past several years. Working together is the only way we will conquer dystonia.

Advocacy Works!

The DMRF has long felt that advocacy is important as a means to secure funding for critical dystonia research efforts. For over 20 years the DMRF has had a formal advocacy program to make sure that dystonia is on the radar for research support. There have been a number of exciting research breakthroughs in the past year: some having received early funding from the DMRF but most having received critical funding from the National Institutes of Health. Advocacy is an important program for dystonia--not just the DMRF-- but for the entire community. Through the Dystonia Advocacy Network (DAN) we come together to work on behalf of those affected by all forms of dystonia to make sure that our legislators are aware of what dystonia is and how they can help and together we push for more important funding for dystonia research. The DMRF is a proud member of the DAN and this collaborative effort.

The DAN has worked so hard these past few years to make sure that dystonia is included on the Department of Defense’s Peer Reviewed Medical Research Program.  Congratulations and many thanks to the DAN advocates who worked this past year on this important program. We’ve learned that the program is funding Nutan Sharma, MD, PhD for her work, “Dopamine Dysfunction in DYT1 Dystonia.” We are grateful to Jenelle Dorner and Peter Cohen for their service as consumer reviewers for the grant reviews this year.

This is another example that dystonia advocacy is effective—advocacy works! We hope you will all consider joining us this year for Dystonia Advocacy Day on April 30 - May 1 in Washington, DC to help us continue to this good work. For more information on Advocacy Day, contact us at dystonia@dystonia-foundation.org or 312-755-0198.

Happy New Year

2012 was a year of many achievements: research advancements, the launch of the DMRF’s clinical fellowship program, success in our legislative efforts, and thousands reached through our education and support programs. As we look ahead to the New Year we are filled with hope for what it will bring our community. We are inspired to continue to aggressively push forward for more scientific breakthroughs and more awareness and recognition of dystonia. We will not rest until our mission is achieved, and we cannot do it alone. We are united in our shared goal of ending dystonia. Last year saw the DMRF family pull together to meet a challenge grant from an anonymous donor to raise an additional $110,000 for our critical research program--which led to a total of $210,000 when matched by the donor. Words cannot express how grateful we feel to our leaders, our donors, our advocates and everyone who has worked to support someone in the DMRF community this past year.

On behalf of the DMRF Board of Directors, staff and for myself, I wish everyone a happy, healthy 2013.  We look to shatter all expectations for scientific advancements, dystonia awareness, and support of those affected by dystonia and their families this coming year. Let’s get to it!

DMRF-funded Researchers Discover Latest Dystonia Gene

 

Congratulations to the team of researchers led by Laurie Ozelius, PhD at Mount Sinai School of Medicine for discovering the latest gene associated with dystonia. The GNAL gene is now the fourth associated with primary torsion dystonia, the symptoms of which may vary from focal to generalized, adult-onset or childhood-onset.

This discovery was made possible by collaboration among several movement disorders centers and over 20 years of partnering with affected families to collect samples and data. The movement disorders team at Beth Israel Medical Center led by Susan Bressman, MD played a major role in outreach to affected families, including working with the DMRF to advertise the need for volunteers through the Dystonia Dialogue newsletter and other media.

The DMRF is extremely proud to have partially supported this discovery. We extend our sincere thanks to all of you who support the DMRF and make it possible for us to fund essential research such as this. We’re also grateful to the 40+ families who participated in this study. The GNAL gene provides another clue along the trail toward improved treatments and a cure. And in the meantime, this discovery will lead to additional options to affected families in terms of diagnosis and identifying family members who may be at risk of inheriting the mutations associated with this gene.

DMRF’s in-house scientist, Dr. Jan Teller said of this discovery, “Every time researchers identify a gene, another piece of the puzzle falls into place to clarify our understanding of dystonia. The protein associated with the GNAL gene may hold important clues about how dystonia originates in the brain and potential new strategies for treatment.”

Many thanks to the researchers who contributed to this study and have given us the next piece of the dystonia puzzle. This latest discovery reflects the core of what the DMRF family is all about: researchers and affected families collaborating toward the common goal of better understanding dystonia and finding a cure.

Click here to read more about the GNAL gene discovery or go to: http://ow.ly/gdXHW