enewsletter of the Chiari & Syringomyelia Foundation August 2012

Transcription

1 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 have been introducing our new SEA Board Members over the last couple of months. This month we feature Dr. Mark Luciano. Dr. Luciano is board-certified in general neurosurgery and in pediatric neurosurgery. He is Head of Congenital and Pediatric Neurosurgery and Co-Director of the Pediatric Neurology Center at Cleveland Clinic. His patients are children and adults with neurological congenital anomalies, hydrocephalus, cerebral cysts, tumors, craniofacial anomalies, tethered cord, Chiari malformation and cerebral palsy. Dr. Luciano also directs the Neuroendoscopy and CSF Disorders program. He has an established clinical program, including research and educational work in neuroendoscopy, a form of minimally invasive neurosurgery. Dr. Luciano has directed Cleveland-area, national and international courses in neuroendoscopy and has developed new techniques in minimally invasive neurosurgery. As a result of his recognized leadership in hydrocephalus, Dr. Luciano has been on the National Hydrocephalus Association advisory board and has appeared in the local and national press and television including the Wall Street Journal, Woman s Day, and the Today Show. In addition to national publications, peer-review and editorial activity, Dr. Luciano is an internationally invited speaker in neuroendoscopy, hydrocephalus and pediatric neurosurgery. He was the Brahm Prakash Memorial Orator in New Dehli, India, and has been invited as visiting professor and speaker in India, China, Egypt and Europe. He has initiated an international cooperation between Cleveland Clinic and Peking Union Medical Center in Beijing, China, for education in neuroendoscopy. In addition, he has served as host and thesis mentor for international MD research fellows from Egypt and Sweden. enewsletter of the Chiari & Syringomyelia Foundation Page 1

2 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. Ahmet Murat Bagci, who was awarded a grant for his project entitled, Automated MRI-Based Parcellation of the Posterior Cranial Fossa. About Ahmet Murat Bagci, PhD: Murat Bagci joined the Department of Radiology at the University of Miami in May He received his graduate degree in 2008 from the Electrical and Computer Engineering Department at the University of Illinois at Chicago. Dr. Bagci's area of research is signal and image processing, and the development of algorithms and methods for segmentation of medical images. He is currently working as a member of Dr. Noam Alperin s Advanced Image Processing Laboratory at the University of Miami, investigating morphological and physiological changes in the brain due to aging, using different MRI modalities. He is working closely with the Evelyn F. McKnight Center for Age-Related Memory Loss, also at the University of Miami. DINNER DANCE FOR A CURE Join us on Saturday, September 22 at the Hilton Garden Inn in Twinsburg, Ohio for a fabulous evening of dinner, dancing and silent auction. Tickets are $75 per person. Click here for Sponsorship Opportunites! If you would like to be a sponsor of the Dinner Dance for a Cure, you can do so online or print and submit the Sponsorship Form. Dinner Dance Invitation Dinner Dance Reply Card Journal Form For more information, contact Cathy Poznik by at cpoznik@csfinfo.org or call enewsletter of the Chiari & Syringomyelia Foundation Page 2

3 RECAP Hi, this is Cathy Poznik, Chapter Coordinator at CSF. WOW we sure were busy during the month of June. We held walks around the country and brought people together who are suffering with the devastating effects of Chiari malformation, syringomyelia, Ehlers-Danlos, hydrocephalus, intracranial hypertension, dysautonomia, autism, and related disorders. There was a lot of fun and tears as we raised money to 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. You can see all the wonderful photos on our facebook page at If you don't have facebook, me at cpoznik@csfinfo.org and I can send you a direct link to all the photo albums from the walks. We had 927 registered walkers and have raised $75,000. The fundraising modules are open until September 1st so make sure all your donations are in by that date. Thank you to all of you who helped to make this happen. A very special thank you to the Chairpersons and their families who spent so much time making this a success. A huge shout out to the following chairs: Jessica Montana-Morse Sacramento, CA Alyson Salzedo-Benison & Mari Fernandez Boca Raton, FL Tonya Jones Orlando, FL Jeanne & Melissa Naples Elmhurst, IL Jennifer West Kokomo, IN Kimberly Miller Bel Air, MD Pam Fenner, Kristin Means & Shirley Cleaver North Beach, MD Kori & Kendall Brzozowy Johnson City, NY Kelly Whitehead Sherburne, NY Sabrina Stabile Staten Island, NY Renne Rogers & Candace Morse Raleigh, NC Kelly Worsencroft & Sherri Ketchesin Cleveland, OH Kim DeAngelo Columbus, OH Donna Renfro Jonesborough, TN Heather Allen Cline - Lewisburg, WV And all the people who set up a solo walk. enewsletter of the Chiari & Syringomyelia Foundation Page 3

4 RECAP (continued) Thank you also to the following Twinsburg High School students who earned over 50 hours of community service for their help with the national walks and the Dinner Dance for a Cure invitations: Sean Clunn Erin Clunn Liz Coy Lexi DeRoia Alli Gamad Gabby Gamad Chris Kern John Pickett Taylor Poole Sierra Shood Sam Stauffer Abby Sutliff Are you ready to set up a CSF unite@night walk for June, 2013? Just click here to fill in the application. Call me if you have any questions about the walks or CSF Chapters. Cathy Poznik (330) or cpoznik@csfinfo.org. unite@night SOLO WALK Thank you to the following people who participated in the unite@night Solo Walk in their neighborhoods and to their family and friends for walking with them! Stephanie Barzellone Jenna Campbell Shawna Fillers Kenny Flaming Kimberly Heininger Shelley Holmes Lori Huckaby Rebbeca Long enewsletter of the Chiari & Syringomyelia Foundation Page 4

5 SOLO WALK (continued) Glen Nishimoto Alicia Roden Shawn Sapp Kolya Smith Chantiell Tabor Jennifer Tep Karly Tumminello The 1st Annual Solo Walk with the Holmes' family was completed on June 1 st in Cody, Wyoming. When I heard of this walk, I first thought that I couldn't do an organized walk this year due to my moderate-severe, symptomatic Chiari, EDS and IIH. However, the Wyoming/Montana medical and general population has a low awareness and education on these disorders, believing that surgery is the cure. So when I saw the Solo Walk, I just couldn't resist! I knew my family would walk and donate but the response to my from friends and family across the nation was amazing! Our Solo Walk was very successful, great family time and I look forward to doing more fundraising as I can. -Shelley Holmes NIGHT OF LIGHT CHILDREN S GALA The third annual CSF Night of Light Children s Gala will take place on Saturday, November 10 th. A distinguished group of philanthropic guests and leaders in the treatment of Chiari malformation, syringomyelia and related disorders, will gather at Anderson House in Washington DC. This exciting evening will raise much needed research and program funds to further our mission, shining the spotlight on these poorly understood disorders. enewsletter of the Chiari & Syringomyelia Foundation Page 5

6 TASTE FOR A CURE A Wine & Dine Extravaganza Join us on Saturday, October 13 th from 7-11pm at Barrington Hills Country in Barrington Hills, Illinois. Mingle with wine makers and fellow foodies as you sample from 60+ highly acclaimed international and domestic wines paired with the appropriate gourmet cuisine. Accompany this with delightful music and the evening is sure to make you feel like you are in the foothills of Napa Valley! Event Chairs: Scott & Carla Janess Host Families: Paul Farrell, Joe & Brenda Fitzpatrick, Gerald & Joan Kyle, Michael & Denise Mikula, Rob & Lory Watson. Thank you to our Event Sponsors: The Wine Cellar and Excel Displays & Packaging Tickets are $125 per person. Purchase tickets online! Sponsorship opportunites are available and formal invitations will be mailed soon! For more information, please contact CSF. CLEVELAND CHAPTER Thursday, September 20, Meet & Greet And Educational Lecture 5:30PM Meet & Greet; 6:30PM Lecture Location: Cleveland Clinic Main Campus, Bunts Auditorium (TT Building, located on E. 90th St. between Carnegie and Euclid), Cleveland, Ohio - Parking available in Lot #4 Expert Speaker: Dr. Rocio Moran, Clinical Geneticist with the Cleveland Clinic's Genomic Medicine Institute Topic: Update on Genetics and Heritability RSVP: Cathy Poznik at cpoznik@csfinfo.org or enewsletter of the Chiari & Syringomyelia Foundation Page 6

7 CLEVELAND CHAPTER (continued) disorders. About Dr. Moran: Rocio Moran, MD joined the Cleveland Clinic Foundation and the Center for Personalized Genetic Healthcare in September 2006 as a full time Clinical Geneticist. She is section head of Pediatric Genetics and leads the genetics program in the Heart and Vascular Institute. As Medical Director of the General Genetics Clinics, she has been pivotal in improving patient access and educating healthcare providers about the role of genetics and genetic testing in clinical practice. She has a special interest in aortic disease and the natural history and etiology of connective tissue Dr. Moran obtained her BS from The Ohio State University in Molecular Genetics in She obtained her MD from Case Western Reserve School of Medicine in Cleveland Ohio and obtained her specialty certification in Medical Genetics and Pediatrics at the University Hospitals of Cleveland, Rainbow Babies and Children s Hospital in Cleveland Ohio. She is board certified in Medical Genetics and Pediatrics. NEW YORK CHAPTER TUESDAY, OCTOBER 23, MEET & GREET AND EDUCATIONAL LECTURE 6:00pm Meet & Greet; 7:00pm - 8:00pm Lecture Location: North Shore University Hospital, 300 Community Drive, Rust Auditorium, Manhasset, New York Expert Speaker: Dr. Roger Kula Topic: Pregnancy and Diagnostic Methodologies RSVP: Andrea Grosz at agrosz@csfinfo.org enewsletter of the Chiari & Syringomyelia Foundation Page 7

8 NEW YORK CHAPTER (continued) About Dr. Kula: Roger W. Kula, M.D., has been Medical Director of the Chiari Institute since He received his neurology training at the University of California Hospitals, San Francisco, where his exposure to the influence of then-chairman Robert A. Fishman, M.D., first stimulated his interest in spinal fluid physiology. In 1977, he established a neuromuscular disease program at the SUNY Health Science Center at Brooklyn as assistant professor of neurology. He went on to establish one of the most clinically active Muscular Dystrophy Association clinics in the tri-state area and developed a national reputation in the study and treatment of autoimmune neuromuscular diseases, motor neuron diseases and muscular dystrophy. He was honored for his dedication to the clinical care of patients by being named the first recipient of the Muscular Dystrophy Association's Ade T. Milhorat Humanitarian Award in After an increasingly close collaboration with Dr. Thomas H. Milhorat through the 1990's, his interests expanded to include the diverse and subtle neurological symptoms plaguing Chiari and syringomyelia patients. He has been a funded investigator with grants supported by the American Syringomyelia Alliance Project, the Muscular Dystrophy Association and numerous pharmaceutical groups such as Amgen, Regeneron, Ahhott Labs and Burroughs-Wellcome. FOLLOW CSF ON TWITTER AND ON OUR NEW YOUTUBE CHANNEL! To follow CSF s exciting activities, projects, meetings and more on Twitter, click here. If you would like to view our educational videos, you can now do so on YouTube. Just click here. enewsletter of the Chiari & Syringomyelia Foundation Page 8