2014 Letter from the Chairman

At this joyous time of year, we reflect on the many blessings this year held for the Chiari & Syringomyelia Foundation. Thanks to you and your generous gifts, we accomplished many short term goals in 2014, established the framework for many exciting long term projects, and now we look forward to a fruitful and productive 2015.  I’d like to update you on the progress we made in 2014.

We are currently working on several important projects, including an international patient registry, which will help provide answers to questions that plague physicians and researchers, alike.  CSF continues to grow its ongoing projects, as we hosted several research symposia and colloquia to bring scientists, physicians and technicians together to answer difficult questions from many perspectives. We have also seen the expansion of regional educational chapters nationally and internationally to educate and spread awareness about Chiari malformation (CM), syringomyelia (SM), and related disorders (RD) and the continuation of our “Consider Chiari” awareness campaign to educate medical professionals.

This year, CSF welcomed four new members to the Scientific Education and Advisory Board (SEA Board). Joining our group of distinguished physicians and scientists were Dr. Douglas Brockmeyer, Chief of the Division of Pediatric Neurosurgery at the University of Utah; Dr. Petra Klinge, Associate Professor of Neurosurgery at The Warren Alpert Medical School of Brown University; Dr. Cormac Maher, Associate Professor of Neurological Surgery at the University of Michigan Health System; and Dr. Brandon Rocque, Pediatric Neurosurgeon at Children’s of Alabama.

Regarding our fundraising efforts, our Charity Ball – Pot O’ Gold Night was held on March 15, in Staten Island, New York and was a huge success. As part of Chiari Awareness Month, on September 5, we held our first charity fashion show, Cocktails & Couture for a Cure , at the Chicago Yacht Club, to help promote awareness. This exciting new event showcased models wearing beautiful fashions, while guests enjoyed delectable bites. Dr. John Ruge from Advocate Lutheran General Hospital in Chicago, shared information regarding these disorders. Additionally, the fourth annual Dinner Dance for a Cure took place on October 25 at the Twinsburg, Ohio Hilton Garden Inn and raised more funds than ever before. These three events combined raised over $165,000.

May 19 th marked our 3 rd annual Bobby Jones Classic golf tournament. This event provides a unique opportunity to become immersed in the classic life, legend and sport of Bobby Jones at historically significant East Lake Golf Club, Jones’ home course. Joining the event were Bob Jones IV, grandson of the legendary golfer; Sid Matthew, famed Jones historian and author of The Life and Times of Bobby Jones; and Charles Harrison, nine time former Atlanta amateur golf champion and a member of the Georgia Sports Hall of Fame and Georgia Golf Hall of Fame. Proceeds from this event have been dedicated to a collaboration between CSF, Georgia Tech, and Emory University – a research program aimed at developing a unique golf cart that will better equip handicapped children and adults to fall in love with golf. Please consider joining us for the Bobby Jones Classic on May 17 and 18, 2015 to support this cause.  Visit www.bobbyjonesclassic.com for more information.

The Fifth Annual Night of Light Children’s Gala was recently held on November 22 nd . Distinguished international honorees and guests gathered at Anderson House in Washington DC, including Excellence in Medicine Honorees, Dr. Donlin M. Long, Professor Emeritus at Johns Hopkins, and Mr. Philip B. Down, Chief Executive Officer at Doctors Community Hospital; and honorees La Comtesse Stephanie de La Rochefoucauld and Lord and Lady Mark and Trish Malloch-Brown. Guests enjoyed mingling with new and old friends, physicians and scientists from around the world, while learning about CSF and the work we are doing to find a cure for CM, SM and RD.

The third annual unite@night walks took place all across the United States throughout the month of June and raised over $100,000 in research funding, with over 40 walk sites and thousands of walkers participating. In addition to the walks, CSF expanded the scope of unite@night to include advocacy for the over one million families in the United States, alone, who are affected by CM, SM and RD. On September 11-12, 2014 , CSF hosted the first ever unite@thehill . Acting as the final unite@night walk, CSF staff members and volunteers walked to Capitol Hill to personally meet with Washington representatives in Congress. If you were unable to join us for unite@thehill this year, you can still make a difference and contact your representatives by sending an e-mail or writing a letter. Watch the unite@thehill video series on the Advocacy page of the CSF website to get a better idea about how you would like to advocate for the children and adults living with these disorders.

In April, our Strategic Planning meeting was held in San Francisco, California and was attended by members of the CSF SEA Board, Board of Directors, Board of Trustees and staff.  Attendees worked tirelessly to chart CSF’s course for the next five years and many stayed to be part of the annual Think Tank meeting, a convening together of the thought leaders and experts in the fields of CM, SM, and RD of the brain and spinal cord. The 2014 Think Tank marked the first steps towards creating our international patient registry, utilizing input from experts whose geographic influence span multiple continents. The purpose of this work is to create cohesive and reliable data more readily available to researchers and allow investigators to produce scientific and epidemiological studies that are efficiently carried out and valid.

The beginnings of this project culminated in our first International Patient Registry meeting, held in October in Boston, Massachusetts. World-class clinical and scientific experts who have made contributions to our understanding and treatment of CM and SM, met to discuss the development of project-specific data elements. By gathering input and feedback across scientific and clinical disciplines, we hope to create a registry that contains information that is scientifically useful and easy-to-use for the research community, but also truly reflective of patients’ needs, across the globe. The following day, we held the CSF research colloquium with presentations given by physicians and experts on topics relating to co-morbid conditions that confound the outcome of Chiari surgery.  In November, CSF presented a half-day colloquium in Charleston, South Carolina. This conference focused on hypermobility and connective tissue disorders: their presentation, diagnosis, and treatment. Presentations were given by nationally and internationally renowned physicians, whose specialties range from neurosurgery, to ophthalmology and cardiology.

In an effort to expand our reach across the United States and around the world, our chapter program continues to thrive, with twelve regions and plans underway to roll out new chapters in South Carolina, Texas, and California in the coming year. Each chapter offers free educational lectures for medical professionals, patients, and their families, presented by experts in the fields of CM, SM and RD; these talks are videotaped and presented free of charge on our website.

Additionally on the research front, members of the CSF staff attended the NIH Hindbrain Conference in Bethesda, Maryland in June of this year. This focused workshop brought together 30 researchers who are leaders in the fields of midbrain/hindbrain malformations and hydrocephalus.  Recent advances in neuroimaging have led to the in utero identification of numerous developmental malformations of the midbrain and hindbrain including those leading to hydrocephalus. A white paper will ultimately summarize the results of the discussions and prioritize recommendations for the field for improved classification and identification of research opportunities.

It’s been quite a productive year, as we continue to build a solid foundation and set our course for the future. Visit our website at CSFinfo.org, click on Sign Up Now and we will add you to our mailing and email contact list. You can also keep tabs on all our ongoing research, by visiting our website to watch lectures and annual colloquium proceedings.

Please consider making your year‐end tax-deductible contribution to CSF by donating online at www.CSFinfo.org ... just click the DONATE button. If you prefer to mail your gift, please send to:

Chiari & Syringomyelia Foundation, 69‐39 Yellowstone Blvd. #216, Forest Hills, NY 11375

Thank you so much for your support of CSF! Have a healthy & happy New Year!


Paul J. Farrell

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