Our History



ŸŸŸBonnie Strauss begins experiencing neck spasms. (Click here for Bonnie Strauss's personal profile)



After 6 long years, a neurologist in New York City  finally diagnoses Bonnie with spasmodic torticollis, a form of dystonia characterized by involuntary contractions of the muscles in the neck.



Determined to make a difference by helping to raise funds for dystonia research, Bonnie hosts the 1st Annual Dystonia Golf Invitational at Century Country Club.



Bonnie establishes The Bachmann-Strauss Dystonia & Parkinson Foundation with her father, Louis Bachmann. The Foundation goes on to raise $35 million to fund 235 research grants to study these two closely related neurological movement disorders and establishes four Centers of Excellence to improve patient access to specialized care.



A Bachmann-Strauss Foundation grant helps fund a team led by researcher Xandra Breakefield to identify the first ever dystonia gene, DYT-1 A mutation in this gene has been found to be responsible for early onset primary dystonia, which typically presents in childhood or adolescence and is one of the most severely debilitating forms of dystonia.


The first Bachmann-Strauss Patient Symposium takes place, giving patients and caregivers access to leaders in the field of dystonia & Parkinson’s research.



Bachmann-Strauss holds its first Think Tank on dystonia & Parkinson’s research, bringing together an international group of neurologists, geneticists and pharmacologists to discuss the current issues in the field and recommend the next steps for future research.



Grantee Michele Tagliati studies low-frequency Deep Brain Stimulation (DBS) for treatment of primary DYT-1 dystonia, resulting in significant improvement of patients’ motor skills.


Bachmann-Strauss hosts its first DBS Reunion, bringing together patients, their families and physicians to share their experiences with DBS and learn about promising new advances.


TEAM Bachmann-Strauss runs its first New York City Marathon to raise funds for dystonia and Parkinson’s disease research.



Bachmann-Strauss establishes its Anti-Dystonia Drug Discovery Program to help produce dystonia oral medications. Researcher Ellen Hess uses a mouse model with dystonic symptoms to accelerate screening and identification of several promising compounds including an mGluR5 agent that has shown positive effects in pre-clinical trials of dyskinesia patients.


The first Jake’s Ride for Dystonia Research fundraiser takes place in Short Hills, NJ. The ride is named for local resident Jake Silverman, who contracted dystonia at age 10 and later underwent DBS surgery.



The first Bachmann-Strauss Dystonia Center of Excellence is established at Mount Sinai Beth Israel Medical Center to provide one-stop patient-centered care for the dystonia community.



A mouse model of a novel mutation in the DYTI gene, TOR1A developed by Dr. Nicole Calakos and her lab at Duke University, enables research on the role of abnormal synaptic plasticity in patients with late-onset, sporadic focal dystonia.


The Bachmann-Strauss Foundation becomes a member of the Dystonia Coalition which is formed by a collaboration of medical researchers and patient advocacy groups to advance the pace of clinical and translational research. The coalition is supported by the Office of Rare Diseases Research in the National Center for Advancing Translational Sciences and The National Institute of Neurological Disorders and Stroke at the NIH. 



With funding from Bachmann-Strauss, researcher and SAB Chair Ted Dawson discovers a protein PARIS that plays a role in how the previously discovered parkin genetic mutation leads to cell death and Parkinson’s progression.


A Bachmann-Strauss grant to The Michael J. Fox Foundation for Parkinson's Research enables researcher Peter Vangheluwe to study mutations in the Park 9 gene and their link to dystonia and Parkinson’s symptoms.


Bachmann-Strauss funds David Eidelberg’s research in neuro-imaging technology.  His work will have a major impact in the way researchers look at dystonia and Parkinson’s disease.


Researcher Christine Klein, MD discovers the underlying gene called TUBB-4, which causes whispering dystonia.



Researchers funded by Bachmann-Strauss identify mutations in a gene called AN03 as a cause of the most common form of dystonia affecting the neck and face.


Discovery of a novel gene, GNAL, for primary torsion dystonia, is made through the collaboration of the molecular genetic laboratory of Dr. Laurie Ozelius, Icahn School of Medicine at Mount Sinai, and a clinical research team led by Dr. Susan Bressman, MD, Director, Bachmann-Strauss Dystonia Center of Excellence and Chair, Department of Neurology, Beth Israel Medical Center, New York.


Former New York City Mayor and former Bachmann-Strauss Board member Michael Bloomberg declares Monday, June 18 “Dystonia Call for Action Day” in celebration of the 20th anniversary Golf Invitational.  In addition to Mayor Bloomberg, through the years celebrities such as Glenn Close, Blythe Danner, Willie Geist, Dr. Max Gomez, Anne Hathaway, Sarah Jessica Parker, have supported the Foundation.


Bachmann-Strauss funds two interrelated grants to researchers working with induced pluripotent stem cells (iPSC). These new tools will help lead to new directions for future treatments in dystonia and Parkinson's disease.


The Bachmann-Strauss Foundation awards the first Silverman Family Fellowship to Jeff Waugh, MD at Massachusetts General Hospital, to obtain specialty training in movement disorders and become an academic pediatric neurologist.



Three new Bachmann-Strauss Dystonia & Parkinson’s Disease Centers of Excellence are established at University of Alabama at Birmingham, University of California, San Francisco and University of Florida, Gainesville. Serving over 10,000 patients annually, these centers coordinate interdisciplinary teams of specialists to provide one-stop care for patients and facilitate collaborations among researchers and clinicians.


Bachmann-Strauss becomes one of 16 Clinical Trial Recruitment Community Partners with Fox Trial Finder. (Click here for additional information)


Board Member and Bachmann-Strauss Young Leadership Council (YLC) Chair Allison London publishes dystonia advocacy piece “Disease and the Public,” in the New York Times.



TEAM Bachmann Strauss crosses the $1.5 million finish line in fundraising since becoming a New York City Marathon Charity Partner in 2006.


Jake’s Ride for Dystonia Research raises over $2 million since its inception in 2008, funding 23 research grants and 4 movement disorder fellowships to date.


A team of researchers led by neurologist William Dauer, MD, at the University of Michigan develops a new strain of mice that closely mimics the symptoms of dystonia, which include uncontrollable twisting, stiffening and spasms of muscles in the neck and limbs.


Bachmann-Strauss forms a new collaborative research alliance with The Michael J. Fox Foundation for Parkinson’s Research to raise awareness and deepen investment in advancing dystonia and Parkinson’s disease research.


As part of our new collaborative research alliance with The Michael J. Fox Foundation, The Bachmann-Strauss Prize for Excellence in Dystonia Research is established to recognize and motivate outstanding achievements in the field.



A celebratory event which honored Bonnie Strauss took place in New York City at The Pierre on May 13, 2022 in celebration of the new alliance between BSDPF and MJFF.


Xandra O. Breakefield, PHD, Professor of Neurology at Harvard Medical School and Geneticist, Neurology and Radiology at Massachusetts General Hospital was awarded the first Prize for excellence in Dystonia Research at the celebratory gala.


Personal Profile of Bonnie Strauss, Founder & President