We are pleased to announce Column of Hope’s latest published research: Statistical shape models of the posterior cranial fossa and hindbrain volumes may provide a more robust clinical metric for Chiari malformation. This is important follow-on work to the groundbreaking Column of Hope funded research, “Mechanisms of cerebellar tonsil herniation in patients with Chiari malformations as guide to clinical management,” from 2010.
The latest Column of Hope funded study is now available. Changes in intrathoracic pressure, not arterial pulsations, exert the greatest effect on tracer influx in the spinal cord. https://fluidsbarrierscns.biomedcentral.com/track/pdf/10.1186/s12987-022-00310-6.pdf
We are pleased to announce that the NHMRC, the Australian equivalent of the NIH, has awarded our research team $729,270 (AU) over 4 years. This funding makes a game changing increase to our current support for Dr. Marcus Stoodley’s world leading team and affirms the scientific significance of our past and current work.
The funds will be used to dramatically increase the speed of our current study to identify the exact anatomical outcome requirements of surgery to: 1) resolve the debilitating Chiari headaches 2) restore and improve cognition in Chiari patients 3) prevent or resolve syringomyelia caused by Chiari malformation.
The news comes on the heels of the publication of COH studies from the University of Akron and from Sydney, Australia in recent weeks, and changes to Australian COVID-19 restrictions which allow Dr. Stoodley’s team to resume performing research MRIs.
COH is an all-volunteer, non-profit organization. We thank our volunteers and supporters who have allowed us to fund world leading syringomyelia research, and make a major contribution to Chiari malformation research, producing 3 dozen peer reviewed journal articles in addition to an international research conference and numerous physician and patient education forums.
https://www.mqneurosurgery.com.au/latest-achievements-events/congratulations-to-prof-stoodley-and-his-research-team-for-being-awarded-a-729-270-nhmrc-ideas-grant
Here is another recently published Column of Hope funded study.
Here is a new published study funded by Column of Hope.
Tachycardia and hypertension enhance tracer efflux from the spinal cord
For a complete list of Column of Hope’s research, go to Google Scholar
How lucky were we at Column of Hope to have our research conference in Buffalo for 100 neuroscientists from 5 continents last year instead of this year?! The CSF Flow at Niagara Falls International Conference was held on June 26 - 28,2019 at the Hyatt Regency Hotel in Buffalo, NY.
This one-year anniversary of the conference is a perfect time to announce that our main 2020 research project can finally start back up in Sydney, Australia after 3+ months of a COVID-19 pause.
We are building on the knowledge from past research to:
Determine what surgical outcome is required to finally eliminate the debilitating Chiari headache.
Determine what surgical outcome is required to improve the cognition issues that often accompany Chiari.
This phase of research will be a precursor to determine what outcome is required from Chiari surgery to resolve the pain and paralysis of syringomyelia.
The ILC generously videotaped and edited the Patient & Caregiver Session of the conference.
Video #1 of the 2019 CSF Flow at Niagara Falls International Conference Patient & Caregiver Session, hosted by Column of Hope, is at https://www.youtube.com/watch?v=wgIVLeLbIws
Video #2 of the 2019 CSF Flow at Niagara Falls International Conference Patient & Caregive rSession, hosted by Column of Hope, is at https://www.youtube.com/watch?v=zHzlojxUDlg
Thank you to all those involved for making the conference so successful!
Mark S. Kane
csfflowsatniagarafalls.org
March 21, 2020
We hope that everyone is doing well and adjusting to the temporary changes to daily life.
Column of Hope’s board of directors made the difficult decision to delay the gala until 2021. We plan to do something on a much smaller scale this October, depending on how things go with COVID-19. Nothing is definite at this point.
Thank you to all of the Column of Hope supporters who helped us raise over $1 million and publish 34 peer-reviewed research articles!
The complete list of articles can be found at:
https://scholar.google.com/scholar?q=%22column+of+hope%22&hl=en&as_sdt=0%2C33&as_ylo=2004&as_yhi=2020
Stay healthy!
March 7, 2020
Four years after Column of Hope’s research team hit blackjack and published our 21st medical/scientific peer reviewed research paper, they have published our 34th paper. The latest study further defines the pathways in and out of a syrinx. This information is critical as we learn to block CSF from traveling the pathways into the syrinx and open the pathways that allow CSF to flow out of the syrinx.
https://link.springer.com/article/10.1186/s12987-020-0171-4
Thank you to all the Column of Hope supporters who made this possible!
Seventeen years and counting! That is how long Column of Hope (COH) and its predecessor have efficiently planned, and impeccably carried out, annual galas dedicated to Working Toward a day Without Pain. At the most recent gala, held on the night of October 26, 2019, over 200 attendees gathered in the ballroom of the Buffalo Hyatt Regency Hotel & Conference Center to “…make a difference, stop the pain, find a cure, and change people’s lives.” Laura Kane-Punyon
Several accomplishments were highlighted at the gala, including, but not limited to: raising the cumulative amount for research approaching $1,000,000, publication of 32 peer-reviewed research studies, hosting a three-day international medical conference that drew physicians and neuroscientists from five continents, co-sponsoring eight Western New York CME programs at which renowned experts reviewed the latest Chiari (CM) and syringomyelia (SM) developments, and coordinating two visiting professor programs to educate and interact with residents, fellows and attending physicians at the University at Buffalo’s Department of Neurosurgery. While listening to live music performed by the accomplished Column of Hope Band, attendees had ample opportunity to sample luscious appetizers while participating in a silent auction and raffle before being seated to listen to remarks made by local, and active, COH supporter, neurosurgeon Dr. Renée Reynolds and Dr. Richard Ellenbogen, both experts in treating patients with Chiari and syringomyelia - two debilitating and painful neurological disorders.
Mark Kane, COH co-founder, and daughter Laura Kane-Punyon presented an updated overview of research funded by COH and thanked COH’s many contributors and volunteers. A delicious and elegantly prepared dinner was followed by a scrumptious dessert enjoyed while lucky individuals delighted in receiving their winning auction items – among them Jessica Tripp, who traveled from her home in Ottawa, Canada to attend the gala.
The evening ended with a live auction, led by auctioneer extraordinaire, Eric Monahan, who prompted, urged and encouraged participants to spend freely and as a result raised a substantial amount of money that will go toward COH’s continued important research activities. And while a date has not yet been designated for the 18th Annual Working Toward a Day Without Pain Gala, this year’s attendees eagerly await that news.
To see gala photos, taken by photographer Ria Tafani, please go to https://www.riatafaniphoto.com/Clients/Gallery2011/Column-of-Hope/Gala-2019/
Barbara Woodworth
Buffalo, New York
Column of Hope – Chiari & Syringomyelia Research Foundation (COH), the Western New York based non-profit organization that funds research for Chiari malformation (CM) and syringomyelia (SM), announces the successful completion of the CSF Flow at Niagara Falls International Medical Conference at the Hyatt Regency in downtown Buffalo from June 25 - June 29, 2019.
Mark S. Kane, Column of Hope’s president, stated, “We were pleased to host an event of this magnitude which brought together CM, SM and EDS experts from 5 continents.” COH was joined by two other US based foundations, Conquer Chiari and ASAP. The ILC Foundation of Canada was also a conference sponsor. The program and speaker presentations were organized by Dr. Marcus Stoodley and Dr. Lynne Bilston, noted neurosurgeon and scientist, respectively. Both organizers hail from Sydney, Australia and have published a significant amount of breakthrough SM and CM work, much of which was funded by COH.
Stoodley and Bilston stated, “The conference involved excellent interaction and high-quality debate about both fundamental mechanisms of Chiari and syringomyelia, and issues for EDS patients. We reached consensus about some key areas in both clinical practice and research and laid out priorities for future research that will help resolve both how to treat these disorders, and why they occur.”
Dr. John Oró, a neurosurgeon from Aurora, CO, delivered the prestigious opening presentation of the conference. Dr. Oró stated, “(the) conference (with a patient interaction meeting), had the mix of strong science, practical knowledge, and social interactions that I found very nourishing. Certainly, a broad and deep meeting. The overarching plan developed by all the organizers is certainly at the core its success. Participants from throughout the globe widened the Chiari perspective as well as outlined future challenges. It was a privilege to participate!”
Five of the experts, including University at Buffalo neurosurgeon Renée Reynolds, remained an extra day to present to 75 patients and caregivers from the US and Canada. The medical conference was summarized, and questions previously submitted by patients and caregivers were answered. The expert panel also solicited input from the audience. Dr. Reynolds stated, “it was a great morning all around.”
With over 300,000 Americans suffering from these painful and debilitating conditions, patients are relying on private research foundations such as COH to help find cures. As COH prepares for its annual gala on October 26, 2019, Dr. Stoodley acknowledged the tremendous amount of research funds for CM and SM that has been generated by dedicated COH supporters in past years. For more information, visit www.columnofhope.org or email info@columnofhope.org.
Column of Hope – Chiari & Syringomyelia Research Foundation is a tax exempt, 501(c)(3) organization dedicated to searching for better understanding, treatments and cures for Chiari malformation, syringomyelia, neuropathic pain, spinal cord injury and related conditions.
We have three pieces of great news to share with you!
Mark your calendar for our 17th Annual Working Toward a Day Without Pain Gala, Lighting the Way to a Cure, on 10/26/19
Our featured speaker is Dr. Richard Ellenbogen from Seattle Children’s Hospital. He is renowned for, among other things, as being the former co‐chair of the NFL Head, Neck and Spine Medicine Committee, the past president of the Congress of Neurological Surgeons, and for his CM/SM expertise. Barbara and I have worked with him in the past and know he is an engaging speaker.
Locally, he is known of as the mentor for Dr. Renée Reynolds of UB Neurosurgeons.
We will have a CME program at 8 AM the morning of the gala for local and regional physician education.
We are now accepting donations for the raffle, silent auction and live auction. Please contact Barbara at bkane834@gmail.com
For more information go to http://www.columnofhope.org/gala
Column of Hope is sponsoring a major International Medical Conference which will draw Chiari malformation, syringomyelia, and Ehlers-Danlos syndrome experts from 20 countries on 5 continents here to Buffalo at the end of this month. We hope to begin the process of a worldwide collaborative effort to improve outcomes for CM and SM patients including those with EDS! Please see the provisional program https://csfflowsatniagarafalls.org/schedule/
Physicians or scientist interested in attending this 24 hour CME conference can still register https://www.eventbrite.com/e/csf-flow-at-niagara-falls-tickets-50967094953#tickets – feel free to share this link.
Four of the experts have agreed to stay on and have a free Patient/Caregiver Information Session on 6/29/19 http://csfflowsatniagarafalls.org/wp-content/uploads/2019/04/Patient-Session-Announcement.pdf - Feel free to pass this on to any CM/SM or EDS patients you know.
In the last three months we have published two important new papers exploring the mechanism of syrinx formation, and one exploring the Chiari headache. This brings us to 32 research articles in peer reviewed publications!
https://www.sciencedirect.com/science/article/abs/pii/S0021929019303069
https://fluidsbarrierscns.biomedcentral.com/articles/10.1186/s12987-019-0127-8
https://www.sciencedirect.com/science/article/abs/pii/S1878875019314883
A complete list of research can be found at: https://scholar.google.com/scholar?q=%22column+of+hope%22&hl=en&as_sdt=0%2C33&as_ylo=2004&as_yhi=2019
Thank you for your support!
Thank you to all who have preregistered for the June 29, 2019 Patient & Caregiver Session, hosted by Column of Hope in Buffalo, NY. We are compiling a top ten list of questions for the presenters. Suggestions will be greatly appreciated as we rank the top ten topics that the Chiari, syringomyelia and EDS communities are interested in.
For those who still want to preregister for the event that features Dr. Marcus Stoodley from Sydney, Australia, Dr. John Oró from Aurora, CO, Dr. Renée Reynolds from Buffalo, NY, and Lynne Bilston, PhD from Sydney, Australia, please go to the following link for more information. http://csfflowsatniagarafalls.org/wp-content/uploads/2019/04/Patient-Session-Announcement.pdf
A Chiari Malformation, Syringomyelia and EDS Patient and Caregiver Session will be held on Saturday, June 29, 2019 at 8:30 AM – 1:00 PM. Registration at 8:15 AM. Please see below to preregister.
This free event is sponsored by the University at Buffalo Neurosurgery, Column of Hope (Host), Conquer Chiari, ASAP and The ILC Foundation.
Speakers: Dr. Marcus Stoodley, neurosurgeon, Macquarie University, Sydney, Australia; Dr. John Oró, neurosurgeon, Colorado Chiari Institute; Dr. Renée Reynolds, neurosurgeon, University at Buffalo; Lynne Bilston, PhD, lead scientist of Column of Hope funded research, Sydney, Australia
Topics include: Scientific Meeting Summary, Chiari Malformation, Syringomyelia, Ehlers Danlos Syndrome, and Previously Submitted Questions
Preregistration is required. -Please email info@columnofhope.org. -Include “6/29/19 Session” on the subject line. -Provide the names and email addresses of those attending. -Provide us with up to 3 questions you would like to see addressed in this session.
Location: Hyatt Regency Buffalo Hotel and Conference Center, 2 Fountain Plaza, Buffalo, NY 14202, US
Fri. night hotel reservation recommended. Reserve your room by May 24, 2019 at https://csfflowsatniagarafalls.org/venue/
***Details on an informal get together on Friday night will follow.
June 26-28, 2019 for researchers, physicians, and physician extenders June 29, 2019 AM for patients and caregivers
Hyatt Regency Buffalo, Buffalo, NY https://csfflowsatniagarafalls.org/
Organizers: Marcus Stoodley, PhD, FRACS – The Australian School of Advanced Medicine, Macquarie University, Sydney, Australia Lynne Bilston, PhD, FAHMS – Senior Principle Research Scientist at NeuRA, Sydney, Australia
This meeting will provide a forum for discussion of the latest research on mechanisms, diagnosis and treatment of patients with Chiari malformation type 1, syringomyelia, and/or Ehlers-Danlos syndrome.
Confirmed speakers include Jon Heiss, MD, Jorg Klekamp, MD, PhD, Andrew Brodbelt, MD, PhD, Paolo Bolognese, MD, John Oró, MD, Fraser Henderson, MD, Atul Goel, MD, Cormac Maher, MD, Clare Rusbridge, BVMS, PhD, Phil Allen, PhD, and many more.
Conference topics will include clinical, basic science, and engineering aspects of cerebrospinal fluid and its disorders, Chiari malformation type 1, syringomyelia, and Chiari malformation in Ehlers-Danlos syndrome.
Who should attend: This is a multidisciplinary conference for neurosurgeons, neuroradiologists, clinicians, scientists, and engineers with research or clinical interest in CSF flow. CME credits will be provided.
Abstracts will be invited for both oral and poster presentations.
The program will also include social events and sightseeing activities, commencing on June 25, 2019.
In addition, please save the morning of June 29, 2019 for the patient/caregiver portion of the program.
Please email info@columnofhope.org for more information and for the save-the-date announcement for physicians and physician extenders.
Foundation Participants: The ILC Foundation of Canada, Conquer Chiari and ASAP join Column of Hope, the host organization, in sponsoring the event. We look forward to making your trip both professionally rewarding and personally entertaining!
Oct. 13, 2018……Column of Hope pulled off another stunning gala at the Hyatt Regency Buffalo! There was a sense of excitement in the air as people lined up for raffle tickets and posed for photos. Many were enjoying a fall inspired cocktail and delicious hors d’oeuvres while perusing the diverse selection of raffle items. Kind, fun competition ensued as guests increased their bids on the plentiful silent auction items.
A first-class meal was enjoyed by all! The members of the Kane and Punyon family band treated us to a fine selection of music. Their commitment to the annual gala adds a unique touch!
During dinner we heard from Dr. Renée Reynolds, a local Buffalo neurosurgeon whose sincere dedication to Chiari malformation and syringomyelia patients could be felt around the room. She expressed gratitude for Column of Hope and all they do to support patients and research.
Dr. Marcus Stoodley, a global leader in Chiari and syringomyelia research, provided an interesting and hope inspired talk! Confirming that 23 peer reviewed articles have been published, through his collaboration with Column of Hope, contributes greatly to the overall goal of “working toward a day without pain.” There was a feeling of pride among those attending, as many have been supporting Column of Hope since the 1st gala 16 years ago. Thank you, Dr. Stoodley, for showing us what animals your kids play with!
Brooke delivered a heartfelt and inspiring account of her experience with Chiari, sharing her tremendous gratitude for Mark, Barbara and those who are a part of Column of Hope. She exudes kindness and strength and has gone on to have an exciting life, travelling and living in different parts of the world.
Laura Kane-Punyon continues to do a flawless job in her role as master of ceremonies. She expressed her deep gratitude for what has been achieved to date and the importance of continuing to donate. It is imperative to keep the momentum going with Dr. Stoodley’s research, as this will translate into better front-line care for all patients.
Susan and Shaun Carleton, volunteers from an organization in Toronto that supports patients with Ehlers Danlos Syndrome, who often also have Chiari, attended the gala for the first time. Susan said there were so many things that impressed her about the gala, not to mention how hard it is to keep a volunteer charity thriving. Column of Hope is doing something remarkable, dedicating 100% of the net proceeds of the annual gala to research, which is manifesting itself into published articles and will ultimately change patient care! We all owe you a debt of gratitude! We enjoyed interacting with others impacted by Chiari at this authentic event and left Buffalo feeling a renewed sense of energy in our own Canadian advocacy efforts.
Column of Hope sincerely thanks everyone who contributed to the success of the 2018 gala! Mark your calendars, next year’s date is October 26, 2019. Help us make 2019 even bigger and better!
See gala photos, taken by Ria Tafani, at https://www.riatafaniphoto.com/Clients/Gallery2011/Column-of-Hope/Gala-2018/
Please save the date for the morning of Saturday, June 29, 2019 for a patient and caregiver seminar. This will be held following the World Medical & Scientific Chiari, Syringomyelia and EDS Conference in Buffalo, NY.
Susan Carleton
Column of Hope (COH) is proud to announce its latest study published in the peer reviewed journal, Fluids and Barriers of the CNS, published April 29, 2018. This study documents our researchers’ work on findings regarding the role of perivascular and paravascular pathways in cerebral spinal fluid (CSF) flowing out of the spinal cord. This is another important building block in our understanding how to induce more CSF flow out of a syrinx thus reducing syrinx size.
In the past our syringomyelia (SM) research has made unprecedented progress:
In less than a decade, the scientific world has gone from not understanding most of the physiology of fluid flow in and around the spinal cord to knowing both the mechanisms and pathways of fluid flow experimenting shrinking syrinxes without surgery based on our work. We believe this work will also lead to developing a protocol to protect an injured spinal cord from forming a syrinx.
We are constantly focused on how to take this knowledge from the lab to physicians’ “tool kit”. To put this progress in prospective, SM was discovered about 475 years ago. COH’s researchers’ progress in the last decade far outstrips the 465 years before that. This progress has been relatively fast in comparison but not nearly fast enough for those experiencing the devastating pain and paralysis caused by SM.
In addition to the research that defines how CM causes SM, we have funded CM specific research as well:
We are trying to bring the scientific advancements to clinics and operating rooms as quickly as possible:
In total, COH has over 30 publications in peer reviewed journals in addition to text book chapters and Ph.D. theses ( I looked it up that is the word ).
We appreciate our donors’ and volunteers’ support has allowed these advances to occur.
Mark your calendar for October 13, 2018 for our 16th Annual Gala
Please help us continue these ground breaking efforts
For more information, please contact me at info@columnofhope.org
Mark S. Kane, President & Co-Founder
3x your impact! Amazon is tripling the donation rate on your first smile.amazon.com purchase - through March 31! Go to smile.amazon.com/ch/20-1959386 and Amazon donates to Chiari & Syringomyelia Research Foundation Inc. (DBA Column of Hope)
Please see the abstract of Column of Hope’s latest sponsored research article. We are excited that the primary author, who was partially sponsored by COH last year, has been hired by Dr. Stoodley’s university to teach and study the neuropsychological impact of Chiari malformation type 1! We hope that someday there will be criteria that informs neurosurgeons what must be achieved in decompression surgery to eliminate cognition and brain fog problems, in addition to pain and CSF flow issues. https://link.springer.com/article/10.1007/s11065-018-9368-6
Please click on the link to read about research funded by Column of Hope in 2016 and 2017. There is more to come in 2018! https://scholar.google.com/scholar?q=%22column+of+hope%22&hl=en&as_sdt=0%2C33&as_ylo=2016&as_yhi=2017%2
This link will take you to the rest of the research that we have provided funding for. There are a few of articles there that are not COH related. https://scholar.google.com/scholar?start=0&q=%22column+of+hope%22&hl=en&as_sdt=0,33&as_ylo=2004&as_yhi=2017
PLEASE MARK 10/13/18 on your calendar to join us at the 16th annual Working Toward a Day Without Pain Gala in Buffalo to raise money for COH’s 2019 CM/SM research efforts.
October 21, 2017 – another Column of Hope (COH) success! This year’s 15th annual gala - “Working Toward a Day Without Pain” - held at the Hyatt Regency Buffalo - not only drew over 200 attendees, it generated substantial funds for research and awareness of the less well-known, but severe, medical conditions - Chiari malformation (CM) and syringomyelia (SM).
While folks enjoyed delicious hors d’oeuvres, gala participants took part in an eclectic basket raffle and extensive silent auction before sitting down to an elegantly presented and served sumptuous dinner. Following dinner, the highlight of the evening were remarks by Dr. John Oró of the Colorado Chiari Institute, one of the world’s leaders in Chiari and syringomyelia. Dr. Oró spoke about efforts to form a community of CM/SM physicians to share vital information generated by newly published professional papers – including six funded by Column of Hope in 2017 alone – followed by remarks by neurosurgeon, Dr. Renee Reynolds of the Buffalo medical community, who touched upon her recent association with COH. Co-founder and president of COH, Mark Kane, presented a composite overview of medical research conducted by Dr. Marcus Stoodley of Australia, the world’s preeminent researcher in the fields of Chiari & syringomyelia.
The master of ceremonies, Laura Kane Punyon, who has suffered from Chiari and syringomyelia her whole life and endured numerous surgeries, spoke about the need to continue raising funds for critical research that will hopefully work toward achieving COH’s mantra - “Working Toward a Life Without Pain.” Praising the long-term support of the Buffalo community she noted, “While it is definitely more difficult to raise awareness for lesser-known diseases, the Buffalo community has been amazing in helping to raise over $800,000.00 for on-going research over the past 15 years.
For the Tripp and Woodworth families, long supporters of COH, this year was especially noteworthy as Bruce and Laurie’s 24 year-old daughter, Jessica, was able to attend her first gala. Coming in from her home in Ottawa, she explained, “In the past I was attending classes that conflicted with the gala.” Now an engineer at a global telecom company, Jessica - diagnosed with syringomyelia several years ago - was pleased to participate in the wonderful evening she previously heard so much about by her parents and grandparents. Hoping to repeat this year’s attendance, The Tripp’s and the Woodworth’s, along with Jessica and many COH supporters and volunteers, look forward to Column of Hope’s 16th Annual Working Toward a Day Without Pain gala to be held on October 13, 2018 at the Hyatt Regency Buffalo.
http://www.wgrz.com/mobile/article/news/local/15th-annual-column-of-hope-gala/71-485118974?scroll=0
8/2017 - You can find the latest study supported by a grant from Column of Hope at the link below. This is part of an effort to improve the care of Chiari and syringomyelia patients immediately, while we continue to work on our long term goal. http://www.worldneurosurgery.org/article/S1878-8750(17)31365-7/fulltext
COH reviews research proposals from institutions with proper investigative research controls. The projects are reviewed first by our volunteer scientific adviser, a neurosurgeon with significant experience in developing medical technology FDA approval for patients. At times, we enlist the assistance of other volunteer scientists with specific expertise. Projects are then voted on by the full COH board of directors. All research projects are governed by a contract which requires the investigators to periodically provide written and verbal reports on their progress. Our president negotiates directly with the institution to ensure that COH only pays for direct research costs and no university overhead. Most abstracts of the articles in peer reviewed medical/scientific journals produced by our projects can be found by searching “Google Scholar,” and filtering by “Column of Hope.” When you do that, please ignore the few articles dealing with South American politics, that is a different Column of Hope.
We have 3 more articles pending approval, with 3 more scheduled to be completed this year for submission.
Below is the link to the most recent COH funded study, Characteristics of CSF Velocity-Time Profile in Posttraumatic Syringomyelia. Some notes:
1) We are moving from, “how did the syrinx form” to taking steps to find, “how do we fix it” 2) The perfecting of phase contrast MRI’s is helping SM patients right now! 3) Notice the disclosure near the end. This indicates the size of the team funded by COH!
http://www.ajnr.org/content/ajnr/early/2017/07/20/ajnr.A5304.full.pdf
The 15th Annual Gala is sponsored by Column of Hope - Chiari & Syringomyelia Research Foundation, a 501 (c)(3) organization. This year, it will be held on Saturday, October 21, 2017, from 6:00 PM - 11:00 PM, at the Hyatt Regency Buffalo, 2 Fountain Plaza, Buffalo, NY 14202.
Net proceeds of the Gala fund important research activities involving Chiari malformation, syringomyelia, neuropathic pain, spinal cord injuries, and related conditions. Previous Galas have funded research that produced major publications in prestigious medical and scientific journals, with more to come.
The Gala includes music, cocktail hour, sit-down dinner, open bar, silent raffle, silent auction, a lively live auction, presenters, and great company.
The guest speaker will be Dr. John J. Oró, founder of the new Colorado Chiari Institute at The Medical Center of Aurora. He will discuss the challenges that patients and doctors face when dealing with Chiari malformation and syringomyelia.
The cost to attend is $175 per seat, $1750 for a table of 10. A room block is available for overnight guests. Please contact Barbara at bkane834@aol.com to inquire about discounted seats for CM/SM families.
If you are not already on our mailing list, please send me a message or e-mail me at the address below with your e-mail address, mailing address, and phone number. You will receive a save-the-date card and an invitation with a reply card when they are mailed in 2017. I will also add your e-mail address to the Column of Hope e-mail list for COH updates and Gala information.
Please consider donating to the silent raffle, auctions, or to our research fund. Contact Barbara Kane at BKane834@aol.com for more information.
It is with grateful thanks that Column of Hope acknowledges the huge success of its 14th annual GALA, held this year at the Buffalo Marriott Niagara in Amherst, New York. With an attendance rocking around 200, this year’s participants not only remain committed to supporting the next “Working Toward a Day Without Pain,” they are already looking forward to next year’s 15th annual celebration, scheduled to return to the Buffalo Hyatt Regency Hotel on October 21, 2017.
This year’s function was especially noteworthy as Dr. Marcus Stoodley traveled from Australia to update attendees on his latest – and significant - research findings, much of which was made possible by generous funding from Column of Hope – Chiari & Syringomyelia Research Foundation. On the morning of October 7, 2016, Dr. Stoodley and Laura Kane-Punyon appeared on AM Buffalo. The following morning, he spoke to local physicians and healthcare professionals, and that night was the keynote speaker at the GALA. His remarks were well received, and welcomed, as he related his recent research findings. Current research, he contends, holds promise for more definitely determining the causes of syringomyelia by advanced MRI scanning that hopefully will be installed in the not too distant future at Mercy Hospital in South Buffalo.
According to Bruce and Laurie Tripp, who arrived from Canada to attend their fourth GALA, “This year was especially meaningful given the fact that Dr. Stoodley’s academic findings may soon be reality and a viable move toward determining treatment for our 23 year-old daughter, Jessica, who was diagnosed with idiopathic syringomyelia at the age of 17.” It is the hope of the Tripp’s – and countless others – that Dr. Stoodley’s research will indeed make possible “a day without pain.”
As for the celebratory events on the night of October 8, 2016, the 14th annual GALA lived up to its expectations. Laura Kane-Punyon ably presided over the event. She, along with her parents, Barbara and Mark Kane, and the board of directors, are responsible for spearheading Column of Hope and, with the help of many volunteers and supporters, continue to work tirelessly to ensure it continues. In his talk, Mark led guests through his and Barbara’s multi-year quest to find answers, and treatment, for Laura who endured numerous surgeries in the hopes of lessening pain caused by Chiari malformation and syringomyelia. Mark spoke from the heart. The audience hung on his every word and responded accordingly. Dr. Lee Guterman, Column of Hope’s scientific advisor, offered remarks as well and stressed his encouragement at the promise that some Buffalo physicians will consider putting into practice ideas shared by Dr. Stoodley. Once again, guests enjoyed music provided by the Kane and Punyon family band, the basket raffle, a silent auction and the live auction, all which generously contributed to funding Column of Hope – a Foundation that allocates 100 percent of the net proceeds generated to research.
So for all pre-planners, now is the time to mark your calendars for the 15th annual Column of Hope GALA on October 21, 2017!
-Barbara Woodworth
Syringomyelia & Chiari Malformation Lecture Series:
Speaker: Dr. Marcus Stoodley Date: October 8, 2016 Time: 8:00 AM to 12:00 PM (Breakfast will be available beginning at 7:45) Location: Buffalo Marriott, Salon B, 1340 Millersport Highway, Amherst, NY 14221 RSVP : 716-633-7022 OR Mark_Kane@ColumnOfHope.org
Syringomyelia and Chiari Malformation are progressive neurological disorders once considered to be orphan diseases. Typical symptoms of these disorders are severe headaches, neurological pain, weakness, numbness and paralysis. With the advent and increased availability of the MRI, we now know that these disorders affect over 300,000 Americans.
While these disorders were first discovered over 470 years ago, the medical community understood very little. As a result, neither doctors nor patients had access to reliable treatments. In fact, many times treatments accelerated the progression of the disorders. After negotiating the SM/Chiari medical community for 10 years, Mark identified need for an organization to be solely dedicated to supporting medical research of the disorders. In 2004, Mark led the charge, along with the Kane Family and the board of directors, to found Column of Hope.
Since then, the organization has raised nearly $750,000 with 99% of the proceeds going to medical research. Volunteers and The Kane Firm CPA, PC have donated their time in order to minimize administrative costs. As a result, Column of Hope’s funds supported 22 peer reviewed studies. Column of Hope’s research has arguably made more progress in understanding the physiology of the disorders over the last 10 years than the combined 460 years prior.
For the last five years, Column of Hope has taken its efforts one step further by bringing renowned physicians and researchers present the most recent discoveries to Buffalo physicians. The U.B. School of Medicine & Biomedical Sciences designates these presaentations for a maximum of 4.0 AMA PRA Category 1 credits TM.
This year, on October 8th at 8 AM, Dr. Marcus Stoodley will be presenting the advances in syringomyelia and Chiari diagnosis and treatment. Stoodley is a Professor of Neurosurgery at the Australian School of Advanced Medicine, Macquarie University, winner of the 2012 John Mitchell Crouch Fellowship; the premier research award of the Royal Australasian College of Surgeons and leader in Syringomyelia & Chiari Malformation physiology research.
Physicians in attendance will present complex cases for a round table discussion. This will offer Buffalo physicians an opportunity to utilize international expertise to develop the best possible treatment plan for patients right here in Buffalo. If you are a physician or physician’s assistant and interested in attending, please RSVP at 716-633-7022 or Mark_Kane@columnofhope.org.
This year’s gala, will be held on Saturday, October 8, 2016, from 6:00 PM - 11:00 PM, at the Buffalo Marriott Niagara, 1340 Millersport Hwy, Amherst, NY 14221. This is a different venue from the past several years.
Net proceeds of the Gala fund important research activities involving Chiari malformation, syringomyelia, neuropathic pain, spinal cord injuries, and related conditions. Previous Galas have funded research that produced major publications in prestigious medical and scientific journals, with more to come.
The Gala includes music, cocktail hour, sit-down dinner, open bar, silent raffle, silent auction, a lively live auction, presenters, and great company.
The guest speaker will be Dr. Marcus Stoodley, from Macquarie University in Sydney, Australia. He will update us on his most recent research success, and clinical advances in the diagnosis and treatment of CM and SM.
The cost to attend is $160/seat, $1600/table for a table of 10. A room block is available for overnight guests.
If you are not already on our mailing list, please send me a message or e-mail me at the address below with your e-mail address, mailing address, and phone number. You will receive a save-the-date card, and an invitation with a reply card when, they are mailed in 2016. I will also add your e-mail address to the Column of Hope e-mail list for COH updates and Gala information.
Please contact us at info@columnofhope.org for information how to participate and for room reservation information.
COLUMN OF HOPE HITS BLACKJACK!
We are proud to announce our 21st publication in a peer reviewed medical and scientific journal. This article marks the fourth journal article published in 2016, and the third article published in the prestigious Journal of Neurosurgery this year.
http://thejns.org/doi/abs/10.3171/2015.10.SPINE15538
This study demonstrates the technique developed by COH researchers to measure the cerebral spinal fluid inside and outside the cord simultaneously. This study allows us to tweak the amount of aquaporin to protect the spine from syringomyelia after spinal cord injury.
Column of Hope is excited to announce that two COH funded studies have been published this month.
1) Cerebellar and hindbrain motion in Chiari malformation with and without syringomyelia: This study has moved us closer to understanding the root cause of the Chiari headache, and suggests that brain motion might not be a factor in syrinx development. http://www.ncbi.nlm.nih.gov/m/pubmed/26722953/
2) Inwardly rectifying potassium channel 4.1 expression in post-traumatic syringomyelia: This Journal of Neurosurgery article documents the impact of potassium (K) channels on the formation of a syrinx in patients with spinal cord injuries. http://www.sciencedirect.com/science/article/pii/S0306452216000117
We believe Column of Hope’s research still leads the world in the effort to understand and prevent post-traumatic syringomyelia (PTS or PTSM)
You may remember that past published articles identified aquaporin levels as key indicators of syrinx formation in spinal cord injury patients. We have learned to up and down regulate aquaporins. Our ability to impact fluid flow then outpaced science’s ability to measure it. That prompted us to successfully develop a first of its kind method to measure fluid flow inside and outside of the spinal cord.
As we understand the mechanism of SM formation in spinal cord injured patients, it takes us closer to developing a protocol to prevent it.
Thank you to Column of Hope donors for making this all possible.
Another year, another successful GALA, and once again Column of Hope, under the auspices of the Kane family, effectively carried out an evening of fun, fine dining, outstanding music and, most importantly, fund-raising of dramatic proportion.
On Saturday night, October 10, 2015, nearly 200 people gathered at the Buffalo Hyatt Regency Hotel for one vital reason – to raise money for research funded by Column of Hope – Chiari & Syringomyelia Research Foundation. This organization, established in 2004, filled much of the void in research progress related to the painful and debilitating neurological conditions of Chiari malformation (CM) and syringomyelia (SM).
Since the start of Column of Hope, much progress has been made and the October 10th GALA - as with the prior twelve GALAs - significantly enabled research by financing medical studies focused on searching for better understanding, treatments and cures for Chiari malformation, syringomyelia, neuropathic pain, spinal cord injury and other neurologically-related conditions.
On the night of the 10th, GALA attendees were privy to the latest research advances made possible by their generous donations of money and auction items. Mark Kane introduced the after-dinner program by welcoming guests and reporting on the Warwick, England research project. Saved from a complete loss of funding, The Warwick Project now - thanks in large measure to the intervention of COH’s medical director, Dr. Lee Guterman - was saved and has been awarded over two million US dollars by the British Government to continue its landmark research.
Next on the agenda was Dr. John Oró, a neurosurgeon from Aurora, Colorado, who updated the audience on his 18 years of treating patients with Chiari and syringomyelia. His vivid description of the suffering experienced by CM and SM patients made it clear why research is needed. Dr. Oró was followed by Laura Kane-Punyon, whose history of many years of enduring surgeries and pain was familiar to many. Laura’s comments received enthusiastic applause as did her announcement that she and her husband are expecting their second child.
Prior to the live auction, Dr. Guterman effectively concluded the program with an excellent and in-depth presentation of the work carried out thanks to the efforts of Column of Hope and its many supporters.
At the end of the evening, as the guests left - many, many with items from the silent and live auctions - there was little doubt that a good time was had by all. There’s little doubt, too, that the expected date for the fourteenth GALA, to be held in 2016, is eagerly awaited.
We are pleased to announce the new research contracts we have approved for 2015, and to summarize our accomplishments of the past year.
Our post-traumatic syringomyelia (SM) work continues to break new ground for identifying the mechanisms of syrinx formation, and influencing these mechanisms. This research also has direct benefit for those who suffer from SM caused by Chiari malformation (CM).
Our new study in Warwick England continues the most promising work in discovering the origins of CM to date. This work appears to be leading to a paradigm shift, in genetic research, away from the traditional genetic studies which have had little success in the last several decades.
Our projects, while focused on CM/SM, are producing discoveries that have broad scientific/medical implications, thanks to our fine researchers and our donors.
Accomplishments for 2014:
In 2014, Column of Hope co-sponsored the Conquer Chiari Conference, an international research meeting focusing on Chiari (CM), allowing many of the top researchers in the world to share their progress in their research and patient care.
Our Australian studies made considerable progress. MRI and computational fluid dynamics findings were again published in the Journal of Biomechanics in 2014. Our joint study in Oslo, Norway and Madison, Wisconsin, studying how obstructions, such as CM, impact cerebral spinal fluid (CSF) flow, was also published in the Journal of Biomechanics in 2014. A follow up study in Madison, to determine if there are morphometric measures that could act as indicators for surgical intervention, is nearing completion. Actual patient MRI scans are being used.
Our Australian research has progressed to a point where our researcher’s ability to influence fluid flow out of the syrinx had outstripped science’s ability to measure that flow. In 2014, our team successfully developed new scientific tools to measure this flow in vivo, and it is expected to be published in 2015. We believe that these techniques will have implications for all research involving CSF flow, even for non-CM or SM disorders.
COH publications since 2011 have been cited over 80 times to date. A total of 14 COH studies have been published in prestigious journals over the last 6 years, including the cover article of the Journal of Neurosurgery in April of 2010. An anticipated 6 more scientific and clinical papers are in various stages of completion, with the expectation of 2015 or early 2016 publications.
Commitments for 2015:
Sydney Australia:
A 3 Year Commitment to a dedicated PhD Student to add to the permanent staff of CM/SM researchers. If we can expand our donation base, we hope start a new student each year to add 3 PhD students to the research team to accelerate the projects.
An electron microscopy study of CSF flow in the perivascular spaces in the spinal cord, to better understand and eventually control the flow.
Documentation and publication of three innovative surgical techniques to better treat Chiari and/or syringomyelia patients.
Warwick England:
Completion of a groundbreaking project to discover the cellular origin of the tissue surrounding the foramen magnum, as well as to understand how defective neural crest cells cause premature closure of the growth plates in the clivus, leading to Chiari malformation. For several decades, traditional genetic researchers have searched in vain to solve the mystery of Chiari malformation. In a few short years, the Warwick team may have become the world’s leading research group understanding an underlying cause of CM. We believe the study will literally change the scientific landscape around not only the cause of CM, but also the impact of defective neuro crest cells on other disorders and failed surgeries.
PLEASE mark your calendars for October 10, 2015 for our 13th annual Gala (and our 4th annual CME session). Please contact me at Mark_Kane@columnofhope.org if you would like to participate in person, donate an auction item or make a monetary donation.
Your support of our work is greatly appreciated!!!
Have a great summer and remember to prepare for the Gala in the fall!
Thank you, Mark Kane, President
This year’s gala will be held on Saturday, October 10, 2015, from 6:00 PM - 11:00 PM, at the Hyatt Regency Buffalo.
Net proceeds of the Gala fund important research activities involving Chiari malformation, syringomyelia, neuropathic pain, spinal cord injuries, and related conditions. Previous Galas have funded research that produced major publications in prestigious medical and scientific journals, with more to come.
The Gala includes music, cocktail hour, sit-down dinner, open bar, silent raffle, silent auction, a lively live auction brought to you by Cash Cunningham, presenters, and great company.
Dr. John Oró, the Medical Director of Neurosciences at The Medical Center of Aurora, CO, and founder of its nationally renowned Chiari Center, will discuss the importance of CM/SM research.
The cost to attend is $150/seat, $1500/table for a table of 10. A room block is available for overnight guests.
If you are not already on our mailing list, please send me a message or e-mail me at the address below with your e-mail address, mailing address, and phone number. I will send you a save-the-date card and an invitation with a reply card when they are mailed in 2015. I will also add your e-mail address to the Column of Hope e-mail list for COH updates and Gala information.
Please contact me at BKane834@aol.com for information how to participate and for room reservation information.
Gala 2014
Another year. Another success. On Saturday night, October 25, 2014 the 12th annual “Working Toward a Day Without Pain” Gala was held at the Hyatt Regency Buffalo. Well attended by local and out-of-town guests, attendees joined together to share in both the fun and efforts to raise funds to support ongoing research to advance the treatment of Chiari malformation, syringomyelia, neuropathic pain, spinal cord injury and related conditions.
Far from disappointed, after listening to keynote speaker Dr. Marcus Stoodley of Australia - perhaps the world’s most preeminent researcher in the fields of Chiari and syringomyelia - the audience was thrilled to learn about definitive advancements in determining the causes and treatment of these conditions. The impact of Dr. Stoodley’s most current research was praised by Column of Hope’s medical and scientific advisor, Dr. Lee Guterman, who additionally mentioned that 40 Buffalo-area physicians attended Dr. Stoodley’s morning seminar at Mercy Hospital. Clearly, the newest research may well have the potential to change medical science and impact the treatment of patients in the not-too-distant future.
Another highlight of the evening, led by Barbara and Mark Kane and their daughter, Laura Kane-Punyon, were remarks by Laura’s long-time friend Jessica Gameron. Jessica, like Laura, underwent many surgical procedures over the years. Touched by Jessica’s reflections of her years dealing with pain and suffering, the audience applauded enthusiastically when she mentioned her recent engagement and graduation from Rutger’s with her masters’ degree.
Remarks by Mark and Laura began and concluded the event, which included an extensive basket raffle, a silent auction and live auction presided over by well-known auctioneer, Cash Cunningham. The evening also included a fantastic – and delicious – dinner, as well as live music performed by the Column of Hope family band, led by Pat Kane, throughout the evening.
Yes, October 25, 2014 ended another year, another Gala, and another Column of Hope success with appreciation and news that the 13th annual “Working Toward a Day Without Pain” Gala will be held on October 10, 2015. Save the date!
Photos of the event can be viewed at http://everlastingkeepsakes.smugmug.com/Column-Of-Hope-Gala-2014/n-2zDmZ/i-WQdBkvC.
Congratulations to Laura Holena, DDS, who recently became a member of Column of Hope’s board of directors. Laura is a dentist who limits her practice to children and adult special needs patients. She has Chiari malformation and syringomyelia, and has been a long time active supporter of Column of Hope. She resides, along with her beautiful coffee dogs, in PA.
It is a pleasure to provide an update on the progress we have been making with our syringomyelia research work:
Paper accepted for publication in Journal of Biomechanics (published) “Effects of fluid structure interaction in a three dimensional model of the spinal subarachnoid space.” http://www.jbiomech.com/article/S0021-9290(14)00248-6/abstract This paper examines the effect of interactions between the spinal cord and the surrounding cerebrospinal fluid (CSF) in the normal situation and when there is narrowing of the fluid space around the cord. We showed that spinal cord movement is increased in the setting of stenosis, but that this appears to have a small effect on CSF flow and pressure. The structural interactions between the CSF and the spinal cord are not likely to be a major contributor to syrinx formation.
Role of Potassium channels in syringomyelia A certain type of potassium channel (Kir4.1) is linked to aquaporin 4 and is a major channel for controlling fluid content in cells in the brain and spinal cord. We examined this channel in our experimental model of post-traumatic syringomyelia. There is a reduction of Kir4.1 in the spinal cord around syrinx cavities. A decrease in potassium clearance may result in an influx of water from the vasculature into the spinal cord and may therefore play a role in the development of posttraumatic syringomyelia. A manuscript from this work is in an advanced state of preparation, with submission expected in July or August.
Accuracy of MRI in measuring syrinx size in animal models Experiments performed to study syrinx formation or to assess the effects of various interventions (such as aquaporin-modulating medications) rely heavily on the ability to measure syrinx size. Traditionally this is done using tissue harvested from experimental animals. This makes it difficult to assess the changes that occur over time, requiring the use of large numbers of animals. Ideally, MRI could be used to re-image the same animal at different time points, thus obtaining more accurate information and requiring the use of fewer animals. Unfortunately, the accuracy of MRI in measuring cysts has not been tested. We have recently completed a study demonstrating a very high correlation between cyst size on MRI and cyst size measured in harvested tissue, thus supporting the use of MRI for future studies (Figure 1). Submission of this manuscript is expected in August.
Quantitative assessment of fluid flow into normal rat spinal cord and the effect of thecal sac constriction. This study is to demonstrate our new technique of studying CSF flow in the subarachnoid space and in perivascular spaces in the same animal in a way that can be measured (Figure 2). This will be extremely valuable in our future studies of CSF flow in syringomyelia. A manuscript is expected to be submitted in August or September.
Marcus Stoodley PhD,FRACS Professor of Neurosurgery
October 26, 2013 marked the culmination of another successful “Working Toward a Day Without Pain” Gala – the 11th in fact – and we find ourselves looking forward to GALA Number 12, scheduled for Oct 25, 2014.
Involved with COH for the past three years – ever since our granddaughter Jessica was diagnosed with syringomyelia - my husband and I have acquired a tremendous amount of knowledge about this condition. For this we thank the Kane family and their efforts to spread the word about Chairi Malformation and syringomyelia. The Kane’s unfailing dedication and commitment to promoting Column of Hope (COH) is both inspiring and immensely helpful for those new to these conditions.
COH’s GALA this year was no exception when it came to spreading the word. The occasion was lavish, meaningful and worthy of raising a substantial amount of donations in terms of items and funds -with 100 percent of the monies used to support research in the hopes of achieving a Day Without Pain. The GALA’s keynote speaker, Dr. Harold Rekate of the Chiari Institute, presented an informative and well-delivered speech, one that was easily understood by a lay audience.
The GALA, too, serves another purpose. In addition to raising money for research, it brings Chairi Malformation and syringomyelia families together to share experiences, pose questions and compare symptoms, surgeries and medical recommendations. This is tremendously helpful. In our case it was Mark Kane, to whom we owe a debt of gratitude, who put our granddaughter in touch with Doctor Lee Guterman, neurosurgeon and COH scientific advisor. Jessie now makes yearly trips from Ottawa, where she is an engineering physics major at Carlton University, to see Dr. Guterman.
In short, our praise for COH cannot be overstated and we, as well as other COH families, remain appreciative to Column of Hope and the entire Kane family.
Column of Hope is pleased to announce the awarding of a $100,000 follow-on grant to continue the advancement of the research progress made by Dr. Marcus Stoodley’s team in Sydney, Australia. COH’s sponsored research has made unprecedented progress in the last eighteen months. The following link will take you to seven journal articles published in 2012 and 2013: COH Research 2012-13.
COH’s efforts are focused in two main areas. The first arm of our research is to solve the 470 year mystery of the mechanism by which Chiari malformation, arachnoiditis, and other CSF flow interruptions result in syringomyelia. As I stated at the 2012 “Working Toward a Day Without Pain” Gala, Column of Hope’s research has made more progress in the last five years than all of the studies in the previous 465 years. The second major arm of our research addresses post-traumatic syringomyelia. Nearly 30% of spinal cord injury patients develop SM. These syrinxes can be particularly insidious. Dr. Stoodley announced a major breakthrough in October 2012 at COH’s first annual Continuing Medical Education (CME) conference. His team has had success in reducing the size of a post-traumatic syrinx non-surgically, by introducing a substance to increase the body’s own natural defenses. We hope to formally present this study for major publication later this year.
Column of Hope is reaching out to the international, clinical and scientific communities focused on CM and SM. We hope these efforts will produce tangible results that we can announce within a year.
Remember to save the date, October 26, 2013, for the Eleventh Annual “Working Toward a Day Without Pain” Gala. If you are interested in attending, volunteering or donating auction items please contact Barbara at Barbara_Kane@ColumnOfHope.org.
Mark Kane, President
We are excited to announce that another Column of Hope funded study has been published in a prestigious peer reviewed journal, Journal of Neurosurgery.
The following article was published in December: Aquaporin-4 expression and blood–spinal cord barrier permeability in canalicular syringomyelia Laboratory investigation.
Another article has been submitted to a journal, and is under review.
In November, Column of Hope was a sponsor of the Conquer Chiari Research Conference in Chicago. Column of Hope president, Mark Kane, and Dr. Marcus Stoodley, Column of Hope’s principal researcher, attended. Dr. Stoodley presented COH funded research, which he and his research team conducted.
In addition, Column of Hope was a sponsor of the Syringomyelia 2013 Conference in Sydney, Australia, hosted by Dr. Stoodley. Several Column of Hope funded studies were presented at the conference. Dr. Lee Guterman, Column of Hope’s Scientific & Medical Advisor, attended.
With the help of our volunteers and supporters, Column of Hope is making a huge impact in increasing the knowledge base and understanding of Chiari malformation and syringomyelia. Please, continue to join us to make a difference, stop the pain, find a cure, and change people’s lives. These are exciting times at Column of Hope!
Remember to save the date October 26, 2013 for the Eleventh Annual “Working Toward a Day Without Pain” Gala. If you are interested in attending, volunteering or donating auction items please e-mail Barbara at Barbara_Kane@ColumnOfHope.org.
On October 13, 2012, nearly 300 “persons with a purpose” gathered at the Hyatt Regency Buffalo. The occasion - the Tenth Annual “Working Toward a Day Without Pain” Gala. This spectacular fund raising event included a sumptuous dinner, hundreds of fabulous auction items and a plethora of current information about Chiari malformation (CM) and syringomyelia (SM). Since 2004, when Column of Hope – Chiari & Syringomyelia Research Foundation (www.ColumnofHope.org) was founded by Barbara and Mark Kane (Buffalo, NY), Kevin Stringer (Chicago), and Jeff Miller (Connecticut), this organization has spread the word about, and funded, research exploring the causes of these debilitating neurological disorders. To date, Column of Hope (COH) has raised in excess of $500,000.00 at the annual gala, which goes directly to research.
In his opening remarks, Mark Kane welcomed attendees and skillfully “walked” them through the evolution of COH, highlighting his family’s first-hand experience with Chiari and syringomyelia and the dedication of Dr. Lee Guterman, who serves as the organization’s scientific advisor. Later in the evening, the Kane’s daughter, and soon to be first-time mom, Laura Kane-Punyon, reflected on her experiences dealing with Chiari and syringomyelia. Recent COH accomplishments and other COH-funded research, including that currently in progress in Oslo, Norway, were mentioned too.
Focusing on the “HOPE” in Column of Hope, persons touched by these medical conditions are committed to facilitating the medical community’s interest and determination in finding the causes and ultimate cures to these conditions that affect approximately 300,000 Americans. As persons involved with COH for the past two years, Dr. and Mrs. William Woodworth, together with their daughter and son-in-law, Mr. and Mrs. Bruce Tripp, learned of CM and SM after their granddaughter/daughter was diagnosed with syringomyelia. Unfamiliar with either condition prior to receiving this unsettling news, it was meeting Barbara and Mark Kane that gave rise to their dedication to join others in Working Toward a Day Without Pain. “HOPE, as well as information, is what COH had given us and for that we’re grateful,” says Laurie Tripp. “Attending the Gala really puts a ‘face’ on Chiari and syringomyelia. It’s inspiring to see those affected by these conditions join together and enjoy the opportunity to mix, mingle and learn with others who share a similar interest and goal.”
Through the Kane family and COH, the Woodworths and Tripps gathered a wealth of information, much of it from research conducted by Dr. Marcus Stoodley of Australia, one of the world’s foremost researchers in this area. Attending this year’s Gala - their second - both couples were appreciative of the opportunity to personally hear from Dr. Stoodley. As keynote speaker, Dr. Stoodley explained and updated the significant progress he and his research team have made over recent years, much with financial help provided by Column of Hope. Winner of the prestigious 2012 John Mitchell Crouch Fellowship, awarded by The Royal Australasian College of Surgeons, a recent Stoodley team study developed the first mechanism enabling the observation of spinal fluid exiting from the syrinx. This tool is expected to be critical for future studies aimed at preventing and treating SM. Progress was also reported regarding research into a related disorder, arachnoiditis.
As for those in attendance, enthusiasm was visible when the date of the next “Working Toward a Day Without Pain” Gala was announced. On October 26, 2013, a similar or even greater gathering of “persons with a purpose,” including physicians in numerous disciplines, will gather again at the Hyatt Regency Buffalo to take part in, and support, the eleventh annual Gala, sponsored by Column of Hope.
To date, 2012 has been another successful year for Column of Hope (COH) research. There are two main arms of our research.
With our Oslo study in its final stages, we are hoping that it will be the first ever to model CM blockage-induced turbulence in CSF flow. We believe that this turbulence may compromise tissue, and create an opportunity for CSF to enter the closed system of the spinal cord. Our related work of how damage to the blood spinal cord barrier correlates to syrinx formation has just been accepted for publication in a major journal.
In 2010, the preliminary findings of our “Out-of-Phase” study, which was conducted in Sydney, Australia, was featured on the cover of the Journal of Neurosurgery. This study has identified a phenomenon in which the CSF pulse is out of phase with arterial pulse, presumably because of the blockage caused by CM. Our simulations indicate that as the pulse waves become a certain degree out of phase, the pressure on the inside of the cord is less than the pressure outside of the cord. In January of 2012, the Journal of Biomechanics published our related study, which indicates that arachnoiditis also has the ability to induce this “out-of-phase” state. Peer reviewers have asked us to increase our sample size slightly, after which we expect that the completed study will be published later this year. At that time, we plan to partner with SUNY Buffalo’s Department of Translational Research in order to apply for an NIH grant to conduct a multi-facility study to verify and expand our findings.
We believe the combination of the turbulence and “Out-of-Phase” studies will finally answer the 460 year mystery of how CM causes SM!
As both arms of our research converge, we begin to approach an answer about how a syrinx forms. The research we have helped to fund will be featured at two international conferences in the coming months, Conquer Chiari’s Chiari Conference in Chicago, and Dr. Stoodley’s Syringomyelia Conference in Sydney. We are co-sponsors of each event in order to encourage collaboration among the world’s leading CM/SM researchers.
Recently, we have begun to see delays and cost concerns in our research (and the research of others) dealing with the simulation of CSF flow. The world-wide shortage of supercomputer time is actually slowing down CM/SM research. To help ameliorate the problem, we are working with a development stage company in WNY. They appear to have developed a low cost solution using “mini supercomputers” to run the simulations that these researchers have created. We are at the Beta test stage of using these new computer systems to process CSF simulations. We are hopeful that COH can once again add value to our researchers’ efforts, in order to reduce the time it takes our research to improve outcomes for CM/SM patients.
In 2010, COH was credited on a publication of a study from The Chiari Institute on Long Island which dealt with how to assist neurosurgeons in determining the cause of the CM that a particular patient has. Our goal was to have a tool for every neurosurgeon to use, before operating, in order to select the best suited surgical procedure. Continuing with that effort to bring the most recent research into the hands of the surgeons in the field, we have asked our Primary Investigator and honored neurosurgeon, Marcus Stoodley Ph.D. FRACS, from Sydney, to present the latest diagnostic and treatment techniques for CM/SM patients to WNY physicians.
Catholic Health System has been kind enough to organize a physician CME program at 8:30 AM at South Buffalo Mercy Hospital on October 13, 2012 (the morning of our Gala) to accommodate Dr. Stoodley’s presentation. Physician reservation information will be released soon. Dr. Stoodley will also be the featured speaker at our 10th Annual “Working Toward a Day Without Pain” Gala, which starts at 6 PM at the Hyatt Regency. Please contact mkane@kanefirm.com if you would like to join us.
We are pleased with our 2012 results in both arms of our research, but we continue to be impatient. Our efforts are constantly focused, with the help of our volunteer scientific advisor, Dr. Lee Guterman, on determining which projects will have the most payback, and how we can use our resources to speed the translation of our research to tools to improve outcomes for CM, SM, and related disorders patients. We thank our supporters who have made the current progress possible and future progress achievable!
Mark S. Kane, President Column of Hope
The first Chiari study in Buffalo, funded by COH, began September 23 2010. We are finishing our Australian study at Dent Neurological Institute. The study is measuring the timing between the arterial and the CSF pulse. It then models the differential pressure inside the spinal cord vs. outside the cord. We hope this study will help doctors determine when Chiari will cause syringomyelia. We hope this study leads to funding for a much larger study next year.
Column of Hope Announcement: March 23, 2010 We are pleased to announce that Dr Marcus Stoodley’s research, which we have funded for the past four years, has been published in the cover article of the April edition of the prestigious, Journal of Neurosurgery, J Neurosurg / Volume 112 / April 2010. click to download article We are proud that Dr Stoodley’s work, attempting to explain the 400+ year mystery of how a syrinx is formed, has been accepted by his peers in the neurosurgery community. Column of Hope has been able to fund this study and others because of the generosity of those who support the annual Working Toward a Day Without Pain Gala, and the scores of volunteers who make the event possible. Our scientific advisor, Dr Lee Guterman, has recently arranged collaboration between Dr Stoodley’s MRI experts and noted Western NY MRI scientists to further test Dr Stoodley’s findings. Dr Stoodley plans to attend the 2010 Working Toward a Day Without Pain Gala on October 23, 2010. Column of Hope would like to thank all of its supporters who have helped to make this scientific breakthrough possible.
