The conference, which will occur on Oct. 13-14, 2017 in Nashville, Tennessee, is the largest support gathering for those affected by Multiple System Atrophy, a rare and terminal neurodegenerative disorder.

The Multiple System Atrophy (MSA) Coalition, a U.S.-based 501(c)(3) nonprofit, will be holding its annual MSA Patient and Family Conference on Oct. 13-14, 2017, at the Nashville Airport Hotel in Nashville, Tennessee. The event will also be available via a live streaming video on the MSA Coalition’s Facebook page.

The location of this year’s conference holds special significance, as Dr. David Robertson of  Vanderbilt University Medical Center hosted the initial conferences from the late 1980s to the mid-1990s for the SDS/MSA Support Group, now known as the MSA Coalition. This year’s gathering is expected to be the largest annual conference to date, with more than 175 registered attendees.

While registration for this year’s conference is already closed, the conference will be viewable for free online via livestreaming during the conference, and available as videos after the conference at the MSA Coalition’s Facebook page.

I look forward to having the MSA Coalition Conference return to Nashville this year and the Vanderbilt team is pleased to help host this worthwhile event

David Robertson, M.D.

Each year, the MSA Coalition’s annual conference brings together medical professionals, researchers and advocates to provide resources for patients and care partners facing life with MSA. These meetings create an invaluable opportunity for sharing knowledge, insights, and strategies for dealing with the challenges of living with this rare disease. Attendees have the opportunity to ask questions and interact with experts in the field, and also to connect with each other.

“On behalf of the MSA Coalition, it is my sincere honor to host this year’s MSA conference in Nashville. The program is broad in scope, providing diverse interactive sessions for patients, caregivers, and families affected by MSA,” says Dr. Daniel Claassen, Associate Professor of Neurology at Vanderbilt University Medical Center. “This conference is especially unique in that the topics are selected not by clinicians, but by patients and caregivers. We hope attendees will experience a truly comprehensive conference, and have unique opportunities to know more about treatments and exciting new research in the MSA world.”

This year’s MSA Conference is the first to feature two full days of great learning and conversation. Vanderbilt University Medical Center staff and guest speakers serving the MSA community will provide an overview of the disease and future research trends and workshops with practical advice for MSA patients and caregivers.

Friday activities will provide much-needed support in the areas of allied health and practical planning, as well as creative ways to cope and manage the disease. There will also be support group sessions moderated by professionals and MSA Coalition Board Members. Friday evening closes with a welcome dinner and reception.

The MSA Coalition will also hold a special evening event during the Friday welcome dinner on Oct. 13, showcasing the artistic talents from the MSA community through music, dance, poetry and the visual arts. Music, art, dance, and other forms of artistic expression can be a great resource and form of therapy for those experiencing chronic illness like MSA.

“The time I spend in my studio painting has been an important outlet for me as I live each day with MSA, and I look forward to sharing some of my work at this event,” says Hadley Ferguson, Patient Representative to the MSA Coalition Board of Directors. “I also greatly appreciate the opportunity to meet others living with MSA, which is particularly meaningful. The families themselves provide practical suggestions for day-to-day activities they have learned from their own experiences. And just as importantly, these new friendships help to alleviate feelings of isolation typical to those living with a rare disease, and offer encouragement to continue the fight.”

Saturday will feature sessions about symptoms and treatments, with the afternoon highlighted by a presentation on integrative health and alternative care options, future directions in MSA research, Q&A sessions and panels to clarify earlier discussions.

“I attended two conferences with my wife, MSA patient Colleen, and last year’s conference as a widower,” says Larry Kellerman, MSA Coalition Board Member. “Each one has been a wonderful opportunity to mingle with experienced medical doctors and health care professionals who serve the MSA community and watch their interaction with patients and caregivers. As a board member of the MSA Coalition, it makes me so proud to serve this special group living with such a devastating disease.”

 “We have considered feedback from prior conferences and organized a robust two-day program complete with workshops, lectures, support groups, exhibits, and a particularly special Friday evening reception that showcases members of the MSA community,” says Cynthia Roemer, Chairman of the MSA Coalition Board of Directors. “Each year, we grow and improve thanks to volunteers who give their time to this cause. Many thanks to the Vanderbilt team who have been active participants in planning what I believe will be an outstanding conference. ”

“I look forward to having the MSA Coalition Conference return to Nashville this year and the Vanderbilt team is pleased to help host this worthwhile event,” says Robertson, Elton Yates Professor of Autonomic Disorders, Director of General Clinical Research, and Professor of Medicine, Pharmacology and Neurology at Vanderbilt University Medical Center.

The MSA Coalition would like to recognize our Conference Super Sponsor, Lundbeck, our Platinum Sponsor, Theravance Biopharma, our Silver Sponsor, Tobii Dynavox, and Bronze Sponsor, LSVT Global. “Without the support of amazing sponsors, an MSA conference of this magnitude would not be possible,” says Roemer.

About Multiple System Atrophy

Multiple system atrophy (previously known as Shy-Drager Syndrome) is a rare and fatal disorder with less than 15,000 Americans diagnosed and 35,000 undiagnosed at any given time.  According to the National Institutes of Health, “Multiple system atrophy is a progressive neurodegenerative disorder characterized by symptoms of autonomic nervous system failure such as fainting spells (neurogenic orthostatic hypotension) and bladder control problems, combined with motor control symptoms such as tremor, rigidity, and loss of balance and muscle coordination.” MSA affects both men and women primarily in their 50s. MSA tends to advance rapidly over the course of 6 to 10 years, with progressive loss of motor skills, eventual confinement to bed, and death. There is no remission from the disease. There is currently no cure available.

 

About The Multiple System Atrophy Coalition®

The Multiple System Atrophy Coalition is a positive beacon of hope standing up to a little known, rare, insidious disorder. Made up of dedicated volunteers, The MSA Coalition has a primary purpose of encouraging and funding research to find a cure.  At present, as much as 75% of all donations go directly into a dedicated Multiple System Atrophy Research Fund to support research projects relevant to the cure, cause, prevention, improved treatment, diagnosis and/or understanding of Multiple System Atrophy. Oversight of the research grant review process takes the form of a world-class scientific advisory board (SAB) of MSA expert scientists and clinicians who are dedicated to ensuring the most promising MSA research proposals are evaluated, highlighted and recommended for funding. Through their website, social media discussion forums and a dedicated toll-free support line (1-866-737-5999) The MSA Coalition provides much needed emotional support to patients and their families.  The MSA Coalition sponsors and organizes an annual patient and family conference providing people with the opportunity to learn more about MSA and to develop a sense of community. The MSA Coalition also produces and distributes educational materials to the MSA community and healthcare practitioners.

For more information or to donate to The Multiple System Atrophy Coalition, please visit:  www.MultipleSystemAtrophy.org

Source: Vanderbilt University Medical Center

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