enewsletter of the Chiari & Syringomyelia Foundation June 2012

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1 CSF EXECUTIVE DIRECTOR TO SPEAK AT HYDROCEPHALUS CONFERENCE Dorothy Poppe, CSF s Executive Director, will be co-presenting with Dr. Mark Luciano, Head of Congenital and Pediatric Neurosurgery and Co-Director of the Pediatric Neurology Center at Cleveland Clinic, at the Hydrocephalus Association s 12 th National Conference in Bethesda, Maryland. The conference will take place at the North Bethesda Marriott and their presentation, Chiari and Syringomyelia As It Relates To Hydrocephalus will take place on June 29 th from 11:30am to 12:45pm. This conference brings the most current information available from the fields of research, medicine and education to the members of the hydrocephalus community. Families and patients will have an opportunity to ask questions in a Q&A session following the presentation. Please note that presenters can only answer general questions about hydrocephalus and related issues, not specific questions about an individual s symptoms or diagnosis. For more information, click here. NORTHWEST REGIONAL CHAPTER CHIARI SYMPOSIUM Videos of the April 6 th Symposium at the University of Washington School of Medicine are now available on our website. Click on each topic below to view the video. Topics and speakers were: "The Intersection of Chiari and Fibromyalgia" - Dr. Nathaniel Watson "The Difficult Headache and Principles of Treatment" - Dr. Sylvia Lucas "Pain Management in Chiari Syndromes" - Dr. David Tauben "Tethered Cord & Spine Instability - How Do I Know If I Have It?" - Dr. Samuel R. Browd "How Do I Know If My Surgery Failed?" - Dr. Richard Ellenbogen Junel 2012 Page 1

2 WELCOME TO CSF S NEW SCIENTIFIC, EDUCATION & ADVISORY BOARD MEMBERS Join us in welcoming our new Scientific Education & Advisory Board (SEA Board) members to the CSF family. We will be introducing our new SEA Board Members over the next several months. This month we feature Dr. Shane Tubbs. Dr. R. Shane Tubbs is Director of Research in Pediatric Neurosurgery at the Children's Hospital of Alabama. Dr. Tubbs received his Ph.D., P.A.-C. and M.S. degrees at the University of Alabama at Birmingham. He has been an integral member of the Pediatric Neurosurgery team at the Children's Hospital of Alabama, contributing his skills and expertise in clinical and academic matters for almost 20 years. Dr. Tubbs recently celebrated the publication of his 750th peer-reviewed publication. He has authored over 30 textbook chapters and has published 10 books. He was recently chosen as the next Editor-in-Chief of the journal Clinical Anatomy the official journal of the American Association of Clinical Anatomists. Dr. Tubbs' clinical research interests include the study of neuroanatomical relationships (using these data in order to minimize surgical mortality and morbidity) and congenital malformations of the nervous system such as occult spinal dysraphism and hindbrain herniation. CSF FUNDS $100,000 IN RESEARCH The CSF Scientific, Education and Awareness Board, Board of Directors and Board of Trustees are proud to announce the funding of $100,000 in research grants. Through your generous donations, research funding is possible. Each month, we will feature a different grant winner and their research. This month we feature Dr. Malisa Sarntinoranont, who was awarded a grant for her project entitled, Mapping Perivascular Spaces in the Spinal Cord Toward Improved Spinal Cord Flow Models. Read about Dr. Sarntinoranont s research projects here. Junel 2012 Page 2

3 BOBBY JONES CLASSIC RECAP The first annual Bobby Jones Classic took place at the East Lake Golf Club in Atlanta, Georgia on May 14, This memorable event began Sunday night with a welcome reception at the Ritz- Carlton Hotel. This intimate cocktail reception allowed all of the participants in the tournament and their family members to meet and greet and get to know each other before the tournament took place. Not only were participants in the event able to meet fellow golfers and their loved ones but they also had a chance to mingle with world famous golf pro Jay Haas; a great way to start off any golf fans dream weekend. Read the rest of the Bobby Jones Classic recap on the CSF website. GREATER METROPOLITAN WASHINGTON AREA CHAPTER Join us for a Meet & Greet and Educational Lecture on Wednesday, July 18, :00PM Meet and Greet; 7:00PM Lecture Expert Speaker: TBA; Topic: TBA Location: Professional Office Building, Ground Floor Conference Room, 8116 Good Luck Rd., Lanham, Maryland Please respond to Andrea Grosz at agrosz@csfinfo.org if you are interested in attending. 5 TH ANNUAL CHARITY BALL It s not too late to purchase tickets or a sponsorship of our upcoming Charity Ball to be held on Saturday, June 16 th at the Hilton Garden Inn in Staten Island, New York. Join us in honoring Dr. Harold Rekate, Dr. Paolo Bolognese, and Dr. Roger Kula as we celebrate the formation of the New York Metropolitan Area Chapter of CSF; and Mr. Joseph Salvani and Ms. Denise Aversano, of JFS Investments, for their philanthropic support. For more information, visit our website. Junel 2012 Page 3

4 The walks have begun but it s not too late to register! Our first three unite@night walks have already taken place and fun was had by all! "The Columbus unite@night inaugural walk proved to be an incredible night filled with friendship and fun, while raising money to support awareness, education and research for Chiari, syringomyelia and their related disorders." Kim DeAngelo, Columbus, OH Walk Chairperson "The oldest town in Tennessee is bringing the newest awareness & research for Chiari, syringomyelia, and related disorders with the unite@night walks hosted by the Chiari & Syringomyelia Foundation." --Donna Renfro, Jonesborough, TN Walk Chairperson Walks will still be taking place in: California Sacramento, Florida Orlando, Illinois - Elmhurst (Chicago area); Indiana Kokomo; Maryland Bel Air; New York - Johnson City; New York Sherburne; New York - Staten Island; Ohio - Brecksville (Cleveland area); West Virginia - Lewisburg 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 is a one mile casual evening walk, in various locations around the country, during the month of June. 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. For more information, visit our website or contact Cathy Poznik, CSF s Chapter Coordinator, at cpoznik@csfinfo.org or (330) Junel 2012 Page 4

5 CSF EHLERS-DANLOS SYNDROME COLLOQUIUM VIDEO CSF sponsored the Ehlers-Danlos Syndrome Colloquium which was held on October 1-2, 2011 at the Cosmos Club in Washington DC. Click the link above for the event program. The views and opinions expressed by the participants in this Colloqium are their own, based upon their individual specific experiences or their general observations reacting to hypothetical circumstances. The views expressed and the statements made by participating physicians do not represent specific medical advice nor do they represent any official policy or position taken by CSF. Each month, we will feature a different presentation and this month, our featured video is Treatment of Chiari Malformation: Dr. John Oro NEUROLOGY NOW Neurology Now, an official publication of the American Academy of Neurology (AAN), provides patients and their caregivers with credible, up-to-the-minute, balanced coverage of the latest advances in neurology research and treatment. Visit the Neurology Now website along with other helpful and informative websites listed on the Helpful Links page of our website. LOCAL NEW YORK STORE RAISING FUNDS FOR CSF Elf Works Lane, located in Poughkeepsie, NY, near Vassar College has 20,000 unique items in inventory with an eclectic mix of vintage and new collectibles. One of the ways they give back to the community is to encourage their customers to nominate their favorite cause for their Charity of the Month program. CSF has been chosen as Charity of the Month for June! The shop matches any donations walked in, dollar for dollar, during the entire month of June. Stop by Elk Works Lane to support CSF! Their address is 2 Lagrange Avenue, Suite 3 Poughkeepsie, NY Junel 2012 Page 5

6 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! Junel 2012 Page 6