Directors and Staff
Directors and Staff
Board of Directors
Eric Berning
President
Email: [email protected]
John Caemmerer
Vice-President
Email: [email protected]
Annie Chapman
Treasurer
Email: [email protected]
Michele Raye
Secretary
Email: [email protected]
Eric Berning
Eric BerningPresident
Email: [email protected]
Eric Berning lives in Cypress, Texas, and was diagnosed with Chiari and syringomyelia in early 2003, at the age of 36. Despite chronic discomfort and intermittent loss of strength and function in his extremities since a young age, Eric’s condition went undiagnosed and misdiagnosed for many years, during which time he found himself living under the assumption that what he was experiencing must be “normal.” In late 2002, Eric’s chiropractor detected some neurological abnormalities which concerned him enough to not attempt manipulation of his cervical spine, instead insisting upon referring him to a neurologist and even offering to make the appointment himself. Eric agreed to see the neurologist, and after a series of MRIs on his head, neck, and back, Eric was officially diagnosed with CM/SM and, in turn, referred to a neurosurgeon for immediate evaluation. On April 21, 2003, by this time an expectant father, Eric underwent decompression surgery. While not a cure-all, of course, the surgery halted much of Eric’s symptoms from further degeneration. Although he does continue to live with chronic pain, Eric prefers to focus on and celebrate the positives in his life. Case in point: just months after his diagnosis and decompression surgery, Eric and his wife Jennifer welcomed their son Edward into the world—thus making 2003 truly a year of great blessings.
In 2012, Eric began attending local ASAP support group meetings in order to connect with others living with CM/SM, and to lend a voice of understanding and comfort to others facing the same challenges he does. “While we may live with pain, it does not have to define who we are,” he reminds us. With that in mind and wishing to make a difference, Eric joined the ASAP Board to help raise awareness of CM/SM, to find opportunities to share his experiences in an effort to bring hope, understanding and guidance to those who need and seek it, and to ultimately see a cure that ends CM/SM once and for all.
On a personal note, Eric grew up in Toledo, Ohio, and is a diehard Cleveland Browns fan, but he is averse to the Midwest snow, which is why he chooses to live in a warm (hot) climate! Professionally, Eric manages the contingent workforce programs for several large corporations, where he has the pleasure of meeting people from all backgrounds and walks of life. As his son was growing up, Eric enjoyed being deeply involved in his scouting activities, including serving as the committee chairman of his Cub Scout pack and on the committee of his Boy Scout troop. Eric is an active member of his community and church, and has donated countless hours to helping others through various charitable functions—he’s often one of the first to offer a hand in need. While Eric may have to “slow down” at times, he does not like to stop giving, as he truly desires to be a source of encouragement and hope to others. His mantra is a great reminder to us all: You may have to live a life within limits, but you can lead a limitless life!
John Caemmerer
John Caemmerer
Vice-President
Email: [email protected]
John Caemmerer was born and raised in Long Island, N.Y. After getting married, he moved to New Jersey where he raised his family. John now resides in New York again and is self-employed in the construction industry.
John first became involved with the organization when a longtime friend invited him to a fundraising walk. Moved by the personal stories he heard that day, he made the offer to assist with future events. With a background in sales, he was an asset in promoting and developing events. After volunteering for a couple years, he joined the Board of Directors.
John is currently serving on several committees with a special interest in fundraising and raising awareness. He has served as Chair for the Conference Committee for a number of years. It is John’s belief that while we search for a cure, the work that ASAP performs serves to improve the quality of life for persons affected by SM, CM, and related disorders. He believes that by his service he can help people empower themselves to live a life that is defined by their abilities and accomplishments in spite of their diagnoses.
Annie Chapman
Annie ChapmanTreasurer
Email: [email protected]
Annie resides in Pearland, TX, a suburb of Houston, with her two sons, Jacob and Ethan. She obtained her Bachelors of Business Administration, with a concentration in Accounting, from Houston Baptist University and currently is the Chief Financial Officer in the live events industry.
.
Annie’s symptoms began in her early 20’s but it was not until her late 30’s that she was diagnosed with Chiari malformation 1 and syringomyelia, both in the summer of 2010. Her initial diagnosis indicated she did not have Chiari but did have a syrinx in her cervical and thoracic spine. She visited several neurosurgeons afterwards and each of them confirmed she did indeed have a Chiari malformation. After observing the symptoms for a year (numbness, chronic pain, balance issues, short term memory loss, etc) Annie decided to proceed with the decompression surgery in May 2011. One year after her surgery, the tonsillar descent has retreated. A long, but thin, syrinx still is present however.
Through ASAP and referrals from other Chiarian’s, Annie offers support to others preparing for decompression surgery. She understands what it is like to feel isolated and scared when faced with the reality of this rare condition. She continues to share her own success story with others struggling with Chiari and/or syringomyelia.
In 2011, Annie joined ASAP’s finance committee and in 2012 she was elected to the Board of Directors. She hopes to use her business and finance background, along with her personal experience with both conditions, to help ASAP continue on their goal to fulfill their mission “to improve the lives of persons affected by syringomyelia, Chiari malformation and related disorders while we find the cure”
Michele Raye
Michele Raye
Secretary
Email: [email protected]
Michele lives in Northern California with her teenage daughters. She has been volunteering with ASAP for over 3 years organizing and running the ASAP Bay Area Support Group and more recently the online ASAP Southern California Support Group. In addition to her work with ASAP, Michele also volunteers at the hospital where her daughter receives treatment. She is involved with the Department of Family Centered Care as well as with their support. She is working on forming a Family Advisory Council for Neurosurgery. She also runs a non-affiliate online Chiari & Co Prayer Group.
Michele has extensive experience with children and has worked in the childcare field with a wide range of ages. In 2005 after her children finished preschool, she began working for the local school district in special education. In 2010 she began homeschooling both her children while working but since 2012 she has been home full time. Her oldest daughter attends community college and is pursuing a degree in Journalism. Her other daughter is currently finishing high school with the hopes of working with animals.
In 2014 her youngest daughter suffered a 2nd degree traumatic brain injury after being thrown off a horse, head first, into a rail. Within a few years she was diagnosed with Chiari,psuedotumor cerebri, a spinal arachnoid cyst and a cerebrospinal fluid leak. Her daughter has had multiple surgeries including a VP shunt and has found that animals are a great distraction so she regularly volunteers to help foster kittens.
Michele loves being able to help others, offer support and connect with families through ASAP. In her free time she loves the beach, bible journaling, reading, gardening and coffee. Michele and her girls also try to get out at least once a month and go on some kind of adventure, exploring new places and spending time together.
Michele is excited to contribute in another capacity to support ASAP’s mission and vision in helping those affected by Chiari and Syringomyelia. As a parent, Michele is looking forward to the opportunity to be a representative for other parents and a voice for their children. This position will allow her to continue to learn and grow while expanding her circle of influence in serving the Chiari Community and strengthening her support for members and their families. It is her hope that even if our immediate situations can’t be changed, that we can find peace and contentment through support while continuing to seek and work towards better answers. Michele is thankful for this chance and is honored to be able to stand in the gap for others.
Directors At Large
Robert Keating, MD
ASAP Board of Directors
ASAP Medical Advisory Board Chair
ASAP Research Committee
Professor & Chief of Neurosurgery, Children’s National Medical Center
Paolo Bolognese, MD
ASAP Board of Directors
ASAP Medical Advisory Board
ASAP Research Committee
Co-founder, Chiari Institute
Co-founder, Chiari EDS Center at Mount Sinai South Nassau
Brian J. Dlouhy, MD
ASAP Board of Directors
ASAP Medical Advisory Board
ASAP Research Committee Chair
Neurosurgeon, University of Iowa Hospitals & Clinics and University of Iowa Children’s Hospital
Gerry Grant, MD
ASAP Board of Directors
ASAP Medical Advisory Board
ASAP Research Committee
Chair, Department of Neurosurgery,
Duke University
Carina Yang, MD
ASAP Board of Directors
ASAP Medical Advisory Board
Neuroradiologist & Associate Professor of Radiology, University of Chicago Medicine
Ilene S. Ruhoy, MD, PhD
ASAP Board of Directors
ASAP Medical Advisory Board
Neurologist, Medical Director & Administrative Director, Chiari EDS Center at Mount Sinai South Nassau
Vijay Ravindra, MD
ASAP Board of Directors
ASAP Medical Advisory Board
Adult & Pediatric Neurosurgeon, Naval Medical Center & San Diego Rady Children’s Hospital
Barbara “Kat” Helton, RN
Email: [email protected]
Jeni Adair
Email: [email protected]
Molly Lichtenstein
Email: [email protected]
Richard Simon
Email: [email protected]
Professional Staff
Patrice Schaublin
Executive Director
Email: [email protected]
Jen Sadrak
Digital Content Manager
Email: [email protected]
Carol Ybarra
Administrative Assistant
Email: [email protected]
Gerry Grant, MD
Gerry Grant, MDChair of Department of Neurosurgery
Duke University
Gerald Grant, MD, an internationally known surgeon-scientist, has been named the new chair of the Department of Neurosurgery at Duke University School of Medicine, effective April 1, 2022.
Grant returns to Duke from Stanford University, where he is currently an endowed professor and chief of pediatric neurosurgery.
In 2006, Grant joined Duke’s faculty as an associate professor in the Department of Surgery after serving in active duty in the United States Air Force. He was deployed to Iraq in support of Operation Iraqi Freedom. He left Duke in 2013 to become chief of pediatric neurosurgery and vice chair of neurosurgery at Stanford. He also serves an Associate Dean of Academic Affairs at Stanford.
Brian J Dlouhy, MD
Brian J. Dlouhy, MDIowa City, Iowa
Brian Dlouhy, MD is a pediatric and adult neurosurgeon at the University of Iowa Hospitals & Clinics and University of Iowa Children’s Hospital in Iowa City, Iowa. He completed his neurosurgery residency at the University of Iowa working extensively under Dr. Arnold Menezes. He now works side by side with Dr. Arnold Menezes treating all disorders of the craniovertebral junction (CVJ) in children and adults.
Paolo Bolognese, MD
Paolo Bolognese, MD
Paolo Bolognese, MD, graduated from the Medical School of the University of Turin where he completed his neurosurgical training in 1990.A native of Torino, Italy, Dr Bolognese graduated from the Medical School of the University of Turin. He trained twice in Neurosurgery, under Prof. Fasano (Turin, Italy) and under Dr. Milhorat (Brooklyn, NY). In 2001, Dr. Bolognese joined Dr. Thomas Milhorat and then co-founded The Chiari Institute. In 2014, he started the Chiari EDS Center at Mount Sinai South Nassau, along with Dr. Roger W. Kula. His Neurosurgical interests span from Chiari I Malformation to Craniocervical Instability, Tethered Cord, Styloid Hypertrophy, Idiopathic Intracranial Hypertension, and Intracranial Hypotension.
Ilene S Ruhoy
Ilene S. Ruhoy, MD, PhD[email protected]
Neurologist, Medical Director & Administrative Director, Chiari EDS Center at Mount Sinai South Nassau
Ilene S. Ruhoy, MD, PhD is a board-certified neurologist in private practice in Seattle, WA and the medical director for the Chiari EDS Center at Mt. Sinai South Nassau Hospital. Originally from New York City, she received her MD at the University of Pittsburgh and trained in both pediatric and adult neurology at the University of Washington and Seattle Children’s Hospital with fellowship training in neuromuscular medicine and a focus on mitochondrial disease. She is a graduate of the University of Arizona Integrative Medicine Fellowship. Her PhD is in Environmental Toxicology from the University of Nevada. Dr. Ruhoy is the co-editor of Integrative Neurology, published by Oxford Press in July 2020 and the co-editor of Preventative Neurology issue of Seminar in Neurology to be published by Thieme Medical in November 2022.
Jeni Adair
Jeni AdairEmail: [email protected]
Jeni Adair grew up in a small town in Iowa. She left shortly after graduation from high school to pursue a career in shark research. Jeni worked briefly in the Bahamas supporting a team of shark researchers at the Bimini Biological Field Station during the summer before attending college. She studied Marine Biology at The University of Miami and graduated with a double major in Marine Science and Biology, and a minor in Chemistry. Upon graduation, Jeni worked as a Fisheries Biologist for the State of Florida in the Florida Keys. After a couple of years, she decided that she wanted a career that was more conducive to her dreams of one day having a family, and began attending Veterinary School at The University of Florida.
Although Jeni had suffered from headaches all of her life, they did not become severe until her second year of vet school in 1998. At that time, she took a Medical Leave of Absence, and was diagnosed with Chiari Malformation Syndrome. She spent the next 7 years in and out of surgery, due to multiple complications, and was forced to eventually withdraw from Veterinary school. Near the end of her surgeries, she met her husband, Erin Adair. They now have two boys, Jayden (age 11), and Sean (age 7).
Jeni was first introduced to ASAP during her many years of surgeries. She has attended several conferences over the years, and has gained valuable knowledge and support from connections made through ASAP. A few years ago, her son Jayden was diagnosed with Chiari Malformation, as well. This prompted Jeni to become even more involved with ASAP. She formed The Central Florida Chiari & Syringomyelia Support Group, and organized The First Annual ASAP Central Florida Walk & Roll for A Cure in 2018. She feels that it is important to provide support to newly-diagnosed patients, and parents of patients, in the same way that others have done for her. She is passionate about raising awareness of Chiari and related disorders. She has given presentations to each of her sons’ classes, and has spoken to representatives from several media outlets in preparation for The Walk & Roll.
Jeni contacted the Governor of Florida, Ron DeSantis, and spearheaded a drive to make the month of September “Chiari Awareness Month” in Florida. She likewise contacted the Mayor of her town of Apopka, Florida to create a similar Proclamation for the city. She has become an advocate for raising Chiari Awareness in her community and is working on ways to further promote awareness.
Jeni also is the Den Leader for her son Sean’s Cub Scout group. Having actively participated in Girl Scouts as a child, Jeni took upon this leadership role when Sean’s Scout Den was in need. Jeni has always stepped up to serve, whether it be volunteering in her sons’ school, her church’s children’s ministry, or at Harbor House, a shelter for survivors of domestic violence.
Jeni will bring the perspective of a patient as well as the perspective of a parent of patients to the Board. She will also bring her academic background and experience in the fields of biology and anatomy, resultant medical knowledge, as well as decades of experience as a patient. She brings a passion to raise awareness, and to search for better treatments, and, eventually, a cure.
Robert Keating, MD
Robert Keating, MD
Medical Advisory Board Chair
Robert Keating, MD is currently the McCullough Distinguished Professor of Neurosurgery and Chief of Neurosurgery at the Children’s National Medical Center in Washington, DC. Dr. Keating graduated from Georgetown University Medical School in 1983 and subsequently went to New York where he did his training in Neurosurgery at the Albert Einstein and Montefiore Medical Center in the Bronx.
Molly Lichtenstein
Molly LichtensteinEmail: [email protected]
Molly Lichtenstein was born and raised in Gaithersburg, Maryland, where she still resides. She will soon receive her BA in Early Childhood Education and plans to teach Kindergarten. Diagnosed at an early age with Chiari malformation, Molly has undergone multiple surgeries due to her complex condition.
Molly first become involved with the organization in 2015 and held her first Walk and Roll for a Cure! She feels the walk gives her a voice that she otherwise does not have. With the continued support of her family and friends, Molly organizes an annual walk in her community with a dove release in honor of Chiari and syringomyelia warriors.
Molly understands the need for awareness and support of programs to help the Chiari and syringomyelia community.
In 2017 Molly served on the ASAP Chiari & Syringomyelia Conference Committee. She worked with Bridget Maher to organize and manage the KIDS For A Cure program. She also designed the t-shirt logo used to represent the scope of the meeting. Thankful for the opportunities that ASAP has given her, Molly hopes to continue forging new paths and developing programs to benefit others.
Richard Simon
Richard Simon
Email: [email protected]
Rich lives in Wyndmoor, Pennsylvania, a suburb of Philadelphia. He is a graduate of Lehigh University and Vermont Law School. He has spent the past 25 years as a public defender. For the past 20 years, he has represented exclusively juvenile clients.
He was born with Spina bifida, as well as Chiari II and Hydrocephalus. He had surgery at birth which successfully treated those conditions. A car accident in 1990 resulted in deteriorating neurological conditions and an eventual diagnosis in 1995, of hydrocephalus and syringomyelia. Several surgeries followed in an attempt to stabilize his situation.
Rich continues to work despite chronic pain and increasing neurological deficits. He is happy he found ASAP and its wonderful group of supported, compassionate and dedicated members. He is committed to spreading the word about Chiari, Syringomyelia and ASAP so that individuals diagnosed with these conditions have the support and access to services they need to advocate for the necessary treatment. He hopes that, with the support of ASAP and talented physicians and researchers, a cure will be found in the near future.
Vijay Ravindra, MD
About Dr Vijay RavindraAdult & Pediatric Neurosurgeon, Naval Medical Center & San Diego Rady Children’s Hospital
Dr. Vijay Ravindra is a board certified adult and pediatric neurosurgeon and active duty Naval Officer currently stationed at Naval Medical Center San Diego and affiliated with Rady Children’s Hospital. He completed his neurosurgery training at the University of Utah where he worked closely with Dr. Douglas Brockmeyer. He completed his pediatric neurosurgery fellowship at Texas Children’s Hospital – Baylor College of Medicine. His clinical interests include disorders of the pediatric spinal column, in particular the craniocervical junction and scoliosis. He is actively studying tissue properties of the CCJ in children with Chiari malformations.
Carina Yang, MD
Carina Yang, MD, University of Chicago Medicine
Neuroradiologist & Associate Professor of Radiology, University of Chicago Medicine
About Dr Yang: A board-certified radiologist/neuroradiologist, Dr. Carina Yang is an Associate Professor of Radiology, and has served as the Director of Pediatric Neuroradiology at the University of Chicago Medicine since 2013, with a focus on diagnosing and characterizing the full scope of head, brain, spine and neck conditions. Dr. Yang is an expert in interpretation of neuroradiological computerized tomography (CT) and magnetic resonance (MR) examinations, and promotes techniques for pediatric patients to minimize radiation exposure and performing testing without the need for extended sedation. She also serves as the Vice Chair of Diversity & Inclusion for her department, and is the Faculty Director for Fellowship Accreditation with the Office of Graduate Medical Education.
Dr. Yang was previously a team member for the Margaret Hackett Family Program at the University of Chicago, which aims to collaborate with physicians who advocate for the education and the advancement of knowledge pertaining to the care of patients. She is an elected member of the American Syringomyelia & Chiari Alliance Project Board. Dr. Yang is also a collaborating researcher with other pediatric neuroscience clinicians in evaluating topics including noninvasive MR of meningeal lymphatics in patients with craniosynostosis, and the potential relationship of retinopathy of prematurity to posterior reversible encephalopathy syndrome (PRES) in premature infants.
She was selected as a Senior Faculty Scholar in the Bucksbaum Institute for Clinical Excellence, as well as recently inducted as a Fellow of the University of Chicago Pritzker School of Medicine Academy of Distinguished Medical Educators. She also has great interest in promoting neuroradiology education to trainees and practicing clinicians on a global arena, with past invited visiting professorships to locations such as Newfoundland, Canada; Trinidad; Hong Kong; as well as Gwalior and New Delhi, India, in part with funding from two University of Chicago Provost’s Global Faculty Awards. She was selected as the 2019 Anne G. Osborn American Society of North America International Outreach Professor to Ethiopia, and most recently traveled to Armenia for additional volunteer pediatric neuroradiology teaching. She hopes to continue to further her worldwide educational endeavors at new upcoming sites.
Patrice Schaublin
Patrice Schaublin
Executive Director
email: [email protected]
Patrice resides in North Carolina. After many non-diagnoses and misdiagnoses, Patrice was diagnosed in 1993 with syringomyelia soon after the birth of her third child and then later diagnosed with Chiari malformation.
“I felt as if everyone was starting to think I was crazy. I was told it was postpartum depression, I needed to go on vacation and lose the baby weight .” Getting diagnosed made me so happy because I thought maybe now people would understand” said Patrice. It was hard when people would say you look good, but no one ever knew how I felt. “A doctor told me it’s the look-good disease.”
Finally, Patrice asked the question, “How do I get better?” The answer was not a simple one. “I was terrified. I had a newborn and 2 young children. I had so many mixed emotions . I wanted a quick fix. It was during this time she discovered ASAP. They were wealth of information, and committed to supporting those affected by Syringomyelia, Chiari malformation and related disorders.” ASAP helped Patrice by providing specialists names and giving her the support that was needed. Decompression surgery was scheduled and performed in September of 1994 She had to raise her family and show her children that were diagnosed with CM and Ehlers-Danlos Syndrome (EDS), that you can live a fulfilling life. “I am happy to say that my children are all grown adults and have successful careers and happy lives. “
Wanting to give back to ASAP, Patrice started answering support calls. Her involvement progressed to coordinating auctions at the annual conferences and starting a New Jersey support group. Elected to the Board of Directors in 2004, she has worked on a variety of committees, including Personnel and Revenue Generation. Patrice continues her work on the Revenue Generation Committee and is involved in grassroots fundraisers and event planning. Patrice also serves on the Conference Committee and is active in developing support groups. Patrice was elected President to the BOD where she served two terms . She then stayed on as immediate past president for over a year and has now taken on her role as Executive Director.
Patrice knows that fundraisers are an important tool for research. Fundraisers are also an excellent sources of awareness. Her experience goes back more than 20 years where she began her fundraising journey. Always one to take on a challenge. Patrice brought fundraising to a new level in the different schools her children attended where she served as PTA President. She is always looking for the opportunity to get the word out about CM and SM.
In addition to her dedicated service to ASAP, Patrice enjoys spending time with her family, photography, reading, exercising and travel. “I look at the glass as half full. I am grateful for where I am today and I hope to help others in their journey. Positivity is key! Her goal is to make CM and SM a household name and help find a cure for future generations. She feels great strides have been made since her diagnosis in 1993, but there is so much more to do. “Today we are breaking new ground and spreading awareness in new ways”, says Patrice, “I look forward to a bright future in our efforts to help our community.”
Patricia Maxwell
Patricia Maxwell
Operations Director & Newsletter Editor
Email: [email protected]
Patricia Maxwell first met ASAP’s co-founder, Barbara White, in the summer of 1990. At that time Barbara and Don ran ASAP out of their home. Patricia remembers, “During my visits with Barbara, we would talk about the disorder, her history and the organization. I quickly became emotionally involved to those fighting these disorders and in the spring of 1991, I began a relationship with ASAP that has only grown stronger over the years.”
“I have watched the organization mature with dedicated volunteers who have helped ASAP ‘reach the next level’ several times. The knowledge and awareness of syringomyelia and Chiari have made great strides. This would not have been possible without the dedication of its members and Boards. One person can make a difference but through the combined effort of a group, the world can be changed.”
Patricia lives in Longview, Texas. She has three children and twelve grandchildren. She enjoy spending time with her family.
Jamie Mayhan
Jamie Mayhan
Program Director
Email: [email protected]
Jamie has been an ASAP employee since 1997. She resides in Longview, TX with her husband, Larry, three sons, Andrew, Levi, and Garrett, and daughter, Bryleigh.
“I first got involved with ASAP while I was in high school. I volunteered, helping Patricia with much needed filing, numerous information packages and distributing the newsletter to the rapidly growing membership. After several years of volunteering, I was hired part-time and eventually I was hired on full-time. I am not just an employee of ASAP but am part of the ASAP family. To know that I can give comfort to a mother, wife or grandparent gives me great joy.
Personally knowing ASAPs co-founder Barbara White and knowing her dream for ASAP, I feel privileged to be a part of the work that will one day lead to a cure. Its with that knowledge that I am able to give hope and comfort to newly diagnosed people. Throughout the years I have met wonderful and successful people who have overcome the adversity of the disorders to benefit themselves and their family. Without our dedicated members, ASAP would not be what it is today. Not just an organization but a family.”
Jamie enjoys spending time with her family and friends, watching professional sporting events, shopping, making craft projects and watching her sons sporting events.
Jen Sadrak
Jen SadrakDigital Content Manager
Email: [email protected]
Jen Sadrak joined ASAP in 2008 as a volunteer at ASAP’s annual conference in Washington, DC. She has been a Virginia resident most of her life and is a proud Virginia Tech Hokie. Her marketing background includes web design, branding, graphic design and content creation. She is also experienced with fundraising and events management, which she shared while managing ASAP’s second and third Kicks & Licks walks. This fundraiser enabled a research project and decompression surgery for several dogs with Chiari malformation. Jen is passionate about animals of all kinds and has dedicated fifteen years to animal care and rescue. When she’s not spending time with her cats or other people’s pets, she is often with her chickens in the garden or crafting a gift for a friend.
“It means a great deal to me to be able to give back to the Chiari and Syringo community,” says Jen. “Being diagnosed as a kid left me with more questions than knowledge about my neurological issues. As self-empowerment was my only resource, I quickly found ASAP and answers to many questions. I look forward to being a part of the great things that ASAP is accomplishing for patients like me.”
Carol Ybarra
Carol YbarraAdministrative Assistant
Email: [email protected]
I live in Tatum, TX, and have been married to my husband Rocky for 27 years. We have three sons, one daughter, eleven grandchildren, and two great-grandchildren. My top priorities are faith, family, and everything else.
Much of my professional experience is in the oil, gas, and healthcare industries, where I have served in administrative support roles. I feel that service is my calling, and I am excited about this new chapter in my life with ASAP, as I learn more about syringomyelia and Chiari and how I can contribute to the organization. Although I am semi-retired, I remain active and engaged in various pursuits. I have become an independent skincare and cosmetics consultant with a mission to uplift, empower, and validate women. In my spare time, I enjoy cooking and baking for others.
When I’m not working or in the kitchen, my husband often convinces me to join him on weekend road trips in our RV or to go on cruises. I am grateful for the opportunity to serve this community and look forward to my future with ASAP!
Barbara Helton RIGHT NOW
Barbara “Kat” Helton, RN
With over 25 years of experience as a registered nurse, I have dedicated my life to caring for others. However, my greatest calling emerged when both of my children were diagnosed with idiopathic Syringomyelia, an extremely rare condition that profoundly impacted their quality of life.
My journey began when my son was diagnosed at 13, after years of unexplained symptoms and loss of function. Soon after, we discovered that his sister also had the same condition, making their cases even rarer. Since then, I have made it my mission to explore the most advanced treatments and therapies available—seeking ways to not only manage their chronic symptoms but to prevent further debility and, ultimately, find a cure.
Advocacy and awareness have become my passion. Too many people suffer from Syringomyelia without even knowing they have it, or without access to the right resources for help. Through my involvement with ASAP (American Syringomyelia & Chiari Alliance Project), I strive to bring attention to this overlooked condition, ensuring that more families get the support, knowledge, and care they deserve.
I believe that despite the challenges, my children—and others like them—deserve the chance to live full and abundant lives. My work is not just as a mother or a nurse, but as a relentless advocate for hope, healing, and progress in the fight against Syringomyelia.