Who We Are and What We Do

Our Founder

Beka Serdans, RN, MS, NP wears multiple hats. She is a patient diagnosed with dystonia as well as an active healthcare professional and a strong patient advocate. These various roles have allowed her to see all sides of dystonia, and she created Care4Dystonia, Inc. in 2000 as an avenue to help publicize the disease to the media. Beka appeared on the first ever television story on dystonia NBCs Dateline in 1998 with Dr. Mitchell Brin, MD in a story covering the use of Botox for dystonia.

Since then she has appeared in multiple media venues, more often writing about her own experiences and battles with the disease in the 2 popular books I’m Moving Two and I’m Moving On…Are U? Both books have received wonderful reviews from several nonprofit groups including The Parkinson Disease Foundation based in NYC, acclaimed writers and journalists, NBC’s Robert Bazell and New York’s own Jimmy Breslin. Beka was a recipient of the NY Times 2008 Tribute to Nurses Award.

Her hobbies including writing, horseback riding, gardening, reading, and traveling. She works in multiple areas within Manhattan and resides in the daily grind and high-life of Manhattan in NYC. She completed her Masters’ degree studies obtaining her Adult Nurse Practitioner in April 2006 . Her third book, a memoir, will be published in 2012, titled “Two Households, One Life.” She is also moderator of the Wego Health Dystonia Ed Forum as well as a weekly blogger-moderator on all Nursing Medscape BBs. You can also find her writing on www.focalexchange.com and www.medtronicdbs.com

If you’d like to book Beka as a speaker for an event, please contact her via infoc4d@aol.com.

To learn more about Beka Visit and read the following stories online :

Fun Stuff about Beka :

Favorite Color: Lavender
Favorite Movies: The Sound of Music, The Perfect Storm, Shawshank Redemption
Favorite Musicians: Eros Ramazotti, Laura Pausini, Spice Girls, 80’s music, Sarah M.
Most Recent Movie seen: It’s Too Complicated !
Most Recent Books Read: Rivals - Lincoln by Kearns, Resilience by E. Edwards
Political Affiliations: Independent
Favorite Place to Reside: Muenster, Germany
Family: Two younger sisters residing in California and New York
Pets: None (at least right now!)- A Horse named Gaastd, then there is also Tyler, Pettero, Ollie, Dagwood, Kaiser- entire Herd residing on Long Island.
Favorite past time: Beachcombing, Riding and Grooming Horses
Favorite Places to Visit: Aruba; Salzburg, Austria; the Alps; any place with a beach and wide, wide spaces!
Where You can Find Beka: www.facebook.com and Wego Health Dystonia Forum
Blog Site : www.medscape.com/nurses In Our Own Words

Our Advisory Board

The Care4Dystonia Advisory Board consists of allied, active healthcare professionals and primarily serves in the “advisory role” capacity, providing their opinions about awareness, medical care and education aspects as they pertain to chronic illness and dystonia. They have significant research grant decision making experience. You can reach any of them via infoc4d@aol.com. OUR Directors are :

Beka Serdans, RN, MS, NP, Founder (Acting Executive Director); New York, NY, USA

Sharon Dixon Canham, BS, BA; Albany, NY USA

Sharon has a degree in Biochemistry along with a minor in Optical Physics from the University of Rochester. She has worked in the ICU setting within Strong Health. Her husband is an actively practicing Physician’s Assistant. Her speciality in deciphering research is a special asset to C4D.

Andrea Fassaro, Strong Health, Rochester, NY USA ( 1957 to 2007 )
Mary Jane Maltese, RN, BSN; Strong Health, Rochester, NY USA

Mary Jane has been an active Registered Nurse for 27 years working in a variety of clinical and non-clinical and administrative specialities at multiple medical centers in upstate NY. She has extensive experience in chronic illness, geriatrics and the aging population as well as emergency care. She holds a BS in Nursing from the University of Rochester. She has held positions in Women’s Health and also acts as a freelance writing editor.

Nancy Muller, R.T,C.R.T, Winchester, CA USA NMuller406@aol.com

Nancy Muller has been married for 42 years, has a daughter and a son, four grandsons with another on the way. She is a former Registered Radiologic Technologist and was actively involved in the X-ray field for 34 years. Several years into her career she developed dystonia, and despite this setback she decided to specialize in orthopedics working in a specialized practice. She is the former President of the NSTA and now writes a column for their quarterly magazine. She’s works hand in hand with Beka on various projects. She has published a book on spasmodic torticollis co-written by three neurologists. Presently she is a patient advocate for all the dystonia communities around the country and available by phone and email to help with any issues regarding cervical dystonia and also Social Security disability issues. She runs a support group in the area she lives in Southern California in the town of Winchester, which is about 60 miles north of San Diego. Her goal in life is to continue to educate, support and spread awareness to medical students before they go out into private practice, and also to do the same for her surrounding community and even worldwide. To read more about Nancy: www.northcountytimes.com. Click on Features and read the story titled “Real Pain In The Neck“.

Laurel Schroth, RN, CDE, BSN; Rochester, NY US

Laurel is an experienced clinician within the ICU setting and Post-anethesia Recovery Room areas for close to 30 years. She is Certified in Diabetes Education and Post-Anesthesia Care and works as a freelance patient care educator, developing and implementing patient care education protocols and standards, which we at C4D find highly valuable.

Ex-Officio Jessie Drew-Cates, RN, NP, PhD; Rochester, NY USA

Honorary Scientific Advisor Michael G. Kaplitt, MD, PhD; New York, NY USA

As a result of performing DBS on our Founder in 2004, in addition to their many collaborative media engagements during 2005-6; Dr. Kaplitts’ interest in dystonia and the application of gene therapy has re-spiked his interest in the rare disorder. Dr. Michael Kaplitt enrolled in the Tri-Institutional M.D.-Ph.D. Program and received his Ph.D. in Molecular Neurobiology in 1993 from The Rockefeller University and his M.D. in 1995 from Cornell Medical College. Following his Neurosurgery residency and chief residency at Cornell, he completed a fellowship in Stereotactic and Functional Neurosurgery with Dr. Andres Lozano at the University of Toronto prior to joining Weill Cornell Medical Center in July 2001. His clinical activities focus upon using minimally invasive, stereotactic techniques for the treatment of functional disorders such as Parkinson’s disease, essential tremor and epilepsy. He also uses surgical methods to implant devices such as spinal cord stimulators and opiate pumps to treat complex pain. Dr. Kaplitt has pioneered the use of gene therapy in the brain. He has published over 40 papers and has edited two books on this subject. He recently completed the first clinical trial of gene therapy for Parkinson’s Disease for FDA approval in 2003-4, his laboratory is actively researching mechanisms of cell death in diseases such as Parkinson’s and Huntington’s disease. Currently he holds the position of Vice-Chairman of Research Neurologic Surgery. Source: Weill-Cornell Dept. of Neurosurgery.

Most Recent PD Gene Therapy News June 2007 :

Our Sponsors

We are grateful for the guidance, assistance and support given to us by Solstice Neurosciences, Inc. (2006-2008), Allergan, Inc. (2008 ), Mentor Corp. (2008) and Athena Diagnostics, Inc. (2006). Solstice Neurosciences, Inc. is the manufacturer of botulinum toxin type B, MyoBloc. Athena Diagnostics, Inc. is involved with genetic testing DYT1 Early-Onset Torsion Dystonia. Please visit both their websites to learn more about their innovative diagnostic and treatment measures and new patient care initiatives. Mentor Biologics (2008) is the developer of the new botulinum toxin, PurTox. Allergan, Inc. is a leader in the development and production of Botox ie. Botox Dreams Campaign. We are pleased to garner the support of Merz USA, manufacturers of Xeinom, Nt201 Neurotoxin in 2010.

Our Website Designer: Megan Elizabeth Morris

Megan Elizabeth Morris is a designer and businesswoman with over ten years of experience in print and web design, illustration, editing and idea-building. Megan is a design adventurer by day and mezzo-soprano by night, living in Austin, Texas. She and her staff create and develop attractive websites, advertisements, brochures and more based on the specific needs of small businesses, organizations, and individuals. Creativity is highly-valued and since the launch of its new format by Megan’s original design firm, Virtual Magpie, Care4Dystonia has become the most popular dystonia-oriented website available for patients and their families. If you’d like to visit or get in touch with Megan, you can find her at That Idea Blueprint Girl or read her blog at worldmegan.net.

Website Stats :

2003 Unique Visitors to our Site : 7,670
2004 Unique Visitors to our Site : 13,210
2005 Unique Visitors to our Site : 30,521
2006 Unique Visitors to our Site : 40, 363
2007 Unique Visitors to our Site : 62,906
2008 Unique Visitors to our Site: 63,765
- Website Hits 2008 1.5 million with page views
2009 Unique Visitors to our Site : 85,342
2010 Unique Visitors thus far : 54,836 as of 10.May 2010

Our Mission is to help Set the Pace…

Improving Patient Care.
Creating Awareness of dystonia.
Collaborating with other nonprofits and biopharma companies.
Educating the dystonia community and public at large about the diagnosis and treatment of dystonia.

Our goals primarily include:

Improving the quality of direct clinical patient care.
Setting the “foundations” for what constitutes quality dystonia care and research.
Empowering patients to ask questions, seek care, and educate themselves and their families about this devastating disorder.
Creating a “think forum” to entice scientists and researchers into the area of dystonia research and invoke the need for multidisciplinary care.
Collaborating, in the true sense of the the word, with other organizations and business ventures, forging strong ties and relations with them as well as companies providing specific services to Movement Disorders, specifically dystonia.