enewsletter of the Chiari & Syringomyelia Foundation April 2012

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1 Registration is now open! Click here for a list of walk sites. If you are unable to make it to an organized walk site, you can still participate with a unite@night solo walk in your own neighborhood! unite@night will be a one mile casual evening walk, in various locations around the country, during the month of June in This walk will bring together people who are suffering with the devastating effects of Chiari malformation, syringomyelia, Ehlers-Danlos, hydrocephalus, intracranial hypertension, dysautonomia, autism, and related disorders. unite@night will support CSF Chapters to provide education and increase awareness while funding research projects that can potentially find answers to help those who are fighting these disorders. **Raise $25 and receive an illuminated balloon** **Raise $50 or more and receive a unite@night t-shirt and an illuminated balloon** If you would like to organize a unite@night walk in your community, please submit a unite@night Walk Site Application. For more information, please contact Cathy Poznik, CSF s Chapter Coordinator, at cpoznik@csfinfo.org or (330) CHECK OUT GUIDESTAR CSF is proud to be a Guidestar Exchange member! With an independent audit and review of all financial statements, we have shared the most up to date and accurate information reflecting the mission and efforts of CSF. enewsletter of the Chiari & Syringomyelia Foundation Page 1

2 enewsletter of the Chiari & Syringomyelia Foundation THIS MONTH S FEATURED RESEARCHER Simone Bottan received the M.Sc. degree in bioengineering from Politecnico di Milano, Milan, Italy, in He is currently employed and is a PhD candidate at the Laboratory of Thermodynamics in Emerging Technologies, ETH Zurich, Switzerland, as member of The Smartshunt The Hydrocephalus Project (Swiss National Science Foundation, Project K-32K1_120531). His research interests include understanding the mechanics and fluid dynamics of biological systems, and the design and development of biomedical devices. Phantom Model of Physiologic Intracranial Pressure and Cerebrospinal Fluid Dynamics 2011 NIGHT OF LIGHT CHILDREN S GALA VIDEO The 2nd Annual Night of Light Children s Gala was held on November 12, 2011 at the James Burden Mansion in New York City. View the video on our website here to see highlights from this exciting evening. rd We look forward to the 3 Night of Light Gala to be held in Washington DC on November 10, 2012 at the Anderson House. CALLING ALL CSF FRIENDS We want to hear your story!!! Tell us your experience or your family member s experience with Chiari malformation (CM), syringomyelia (SM), or related disorders (RD) in 500 words or less. We will use these stories to educate the public about CM, SM & RD and how these disorders affect individuals and families. We will use these stories on our CSF Facebook page (which will be public on the internet to educate and raise awareness), on our CSF website and at our national events, in order to educate the public. Please us your experience/story, along with two pictures, to stories@csfinfo.org. We will send a small prize to the first 50 people to respond! enewsletter of the Chiari & Syringomyelia Foundation Page 2

3 THE CSF CHIARI SYMPOSIUM Friday, April 6, :30am - 12:00 Noon University Of Washington School Of Medicine, Department Of Neurological Surgery Presents A Chiari Symposium By attending the Chiari Symposium, healthcare providers and those individuals who advocate for the CM/SM community as well as anyone who is interested in learning more about these disorders will be equipped with additional knowledge to utilize new information, techniques and resources for enhanced patient care. Our clinical faculty is internationally recognized as experts in Chiari malformation and syringomyelia, providing patients with advanced, world-class healthcare. The lectures provided through the Chiari Symposium are expected to provide participants with a better understanding of the scope of CM/SM disorders. In addition, the Symposium will yield specific improvements in increased medical knowledge and application of this knowledge to effective patient care. FEATURED SPEAKERS: Samuel R. Browd, MD, PhD Assistant Professor of Neurological Surgery, Seattle Children s Hospital Richard G. Ellenbogen, MD Professor and Chairman, Department of Neurological Surgery Theodore S. Roberts Endowed Chair University of Washington Medical School Sylvia Lucas M.D., Ph.D. Clinical Professor of Neurology Adjunct Clinical Professor of Rehabilitation Medicine University of Washington Medical Center David J. Tauben, M.D. Clinical Associate Professor, Medicine Medical Director, University of Washington Center for Pain Relief, Anesthesia & Pain Medicine Director Medical Student Education in Pain Medicine enewsletter of the Chiari & Syringomyelia Foundation Page 3

4 THE CSF CHIARI SYMPOSIUM (continued) Nathaniel F. Watson, MD Associate Professor of Neurology Co-Director, Harborview Medical Center Sleep Disorders Center For more information, click here for the Symposium Flyer. To register, please Bonnie Bradley or call GREATER METROPOLITAN WASHINGTON AREA CHAPTER Join us on Wednesday, April 18, 2012 for a Meet and Greet and Educational Lecture. Cathy Poznik, CSF s Chapter Coordinator and Shirley Cleaver, Pam Fenner and Kristin Means will be on hand to discuss the unite@night DC area walk. Meeting details are listed below. Looking forward to seeing you there! 6:00PM MEET & GREET 7:00PM LECTURE Expert Speaker: Dr. Myles Koby, Director of Radiology at Doctors Community Hospital Topic: Hydrocephalus and Intracranial Sinus Thrombosis Associated with Chiari Malformation and Ehlers-Danlos Syndrome Location: Professional Office Building, Ground Floor Conference Room, 8116 Good Luck Rd., Lanham, Maryland RSVP: Andrea Grosz at agrosz@csfinfo.org. enewsletter of the Chiari & Syringomyelia Foundation Page 4

5 CONSIDER A RECURRING DONATION TO CSF CSF relies on individual donors for a majority of our funding. We know that for some people, we are just one of many charities they hear from, and that for others making a donation on the spot or at an event is just not feasible. Signing up for a monthly or yearly recurring donation is an easy way to do something good without having to do much at all. Just visit the Donate Online page of our website and choose the frequency of your donation. Your monthly or yearly tax-deductible donation will help keep things moving forward for CSF, and it makes it easy for you to help change the lives of those living with Chiari malformation, syringomyelia and related disorders! CATHY'S CREATIONS Cathy's Creations jewelry website has been offering cause bracelets and pendants for several years now. Recently, they have begun offering a Chiari Awareness Bracelet and $5 from the sale of each bracelet will be donated to CSF. To view the bracelet listing, just click here. CSF NEEDS YOU! CSF is looking for a Grant writer, on a volunteer basis, who is successful and experienced in writing grants for non-profit organizations. Primary responsibilities include; research, write, edit and prepare grants for presentation or submission. enewsletter of the Chiari & Syringomyelia Foundation Page 5

6 CSF NEEDS YOU! (continued) JOB SUMMARY: Supports all fundraising and development activities by researching, writing, preparing and submitting sponsorship and grant proposals, government grant applications, and grant reports for funders. Writing ability is the primary qualification to effectively assimilate information and ideas into well-written, clear and concise formats that communicate CSF s mission and programs to donors and contributors. POSITION RESPONSIBILITIES: 1. Research, write, edit and prepare for presentation or submission: Government, corporate, foundation, and special project grant proposals, and grant reports to support CSF s fundraising activities. Compose proposals for new projects. 2. Oversee tracking of deadlines and reports, data analysis and reporting on projects. Maintain calendar of grant deadlines and final reports on projects. We are looking for a grant writer on a volunteer basis. Please send us your contact information and resume. enewsletter of the Chiari & Syringomyelia Foundation Page 6