Laura Holena, DDS Joins Column of Hope's Board of Directors
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.
June 2014 Updates on Syrinx Research Projects, Dr. Marcus Stoodley
It is a pleasure to provide an update on the progress we have been making with our syringomyelia
Paper accepted for publication in Journal of Biomechanics (published)
“Effects of fluid structure interaction in a three dimensional model of the spinal subarachnoid
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
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
Gala 2013 Review, Barbara Woodworth
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.
Research Update - June 2013
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
Research Update - March 2013
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
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.
Gala 2012 Review, Barbara Woodworth
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.
Research Update - August 2012
To date, 2012 has been another successful year for Column of Hope (COH) research. There are two main arms of our research.
- The first arm of our research involves solving the mystery that has eluded scientists for more than 460 years.
- How do canicular syrinxes form?
- How does cerebral spinal fluid (CSF) penetrate the closed system of the spinal cord to cause syringomyelia (SM)?
- How does CSF travel from the low pressure environment outside the spinal cord to high pressure inside the cord?
- Exactly how does Chiari malformation (CM) cause SM?
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!
- The second arm of our research deals with the formation, and hopefully prevention, of SM after spinal cord injury, which is referred to as post traumatic SM (PTSM).
- This month’s issue of Neurosurgery includes the publication of our study on a principle method for tracking the direction of CSF leaving the syrinx. This marks COH’s 8th credit on a scholarly research study published in a peer reviewed journal.
- This method is particularly important to us, as our 2012 study is focused on varying the concentrations of certain substances near a damaged spinal cord to potentially protect the cord from SM. We are hoping for a tremendous by-product of this study. This research on tracking CSF could potentially lead to a non-surgical procedure for extracting CSF from the syrinx.
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 firstname.lastname@example.org 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
Research Update October 2010
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.
Research Update March 2010
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.