Disorders
Board of Directors
Patrice Schaublin
President
Email: Patrice_Schaublin@asap.org
Patrice resides in Durham, NC with her family. After a whirlwind of non-diagnoses and misdiagnoses, she was diagnosed in 1993 with syringomyelia soon after the birth of her third child and then later diagnosed with Chiari malformation. Patrice had decompression surgery in September of 1994.
Wanting to give back to ASAP for all she received while seeking a diagnosis, Patrice started answering support calls. Her involvement progressed to coordinating auctions at the annual conferences. She then started a support group in New Jersey. 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 knows that fundraisers raise money for research but they also spread awareness. She is always looking for the opportunity to get the word out about CM and SM. Her fundraising experience goes back 18 years. 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.
Patrice feels she must always look at the glass as half full. She has had to raise a family and show her children, you can live a normal and fulfilling life even while dealing with chronic pain. Having children diagnosed with CM and Ehlers-Danlos Syndrome(EDS) she said It's hard when people always say you look great, but one never knows how you feel. Patrice said, "A doctor once said, 'It's the look- good disease' ".
Patrice attended Wheeling College and was a successful sales manager. She now enjoys spending time with her family, photography, reading and her horses. Her goal is to make CM and SM a household name and help find a cure for future generations. She feels we are making bigger strides now more than ever. In 1993, very few people heard the words Chiari or Syringomyelia. Today we are breaking new ground and spreading awareness to new levels.
William Hagelgans
Treasurer
Email: Bill_Hagelgans@ASAP.org
William (Bill) resides in Oreland, PA, a suburb of Philadelphia, with his wife, Christine, and two daughters, Paige and Blair. After graduating from high school in Bethlehem, PA, Bill enlisted in the United States Coast Guard. Stationed throughout the lower 48, he also did a tour in Ketchikan, AK (his most memorable).
After discharge, he attended East Stroudsburg University in PA and then transferred to Widener University in Chester, PA, where he obtained a Bachelor of Science degree in Business Administration/Accounting. Bill currently serves as the Director of Business Development for a logistics company.
Bill's youngest daughter, Blair, was diagnosed with Chiari and syringomyelia in 2005 at the age of 8. Unfortunately, it was immediately apparent that the medical community was not well informed or trained when dealing with Chiari and syringomyelia. It was not until his wife, a nurse, found the ASAP web site which provided the valuable information and support that his family needed. After attending one of the ASAP conferences, he realized there were many people like himself in need of correct information and support.
After a recent car accident without any prior symptoms, Bill's wife, Christine, was also diagnosed with a Chiari malformation. Being directly affected by the lack of Chiari knowledge involving doctors, insurance companies and the general public, Bill feels strongly the need to support and help raise awareness to increase funding for research and education of Chiari malformation and syringomyelia. He believes he can help accomplish this by volunteering and by direct involvement as an ASAP board member.
Karen McFarland, R.N.
Secretary
Email: Karen_McFarland@ASAP.org
Karen McFarland lives in Richmond, Virginia and is the mother of two girls, Stephanie and Kimberly. She learned about ASAP in 1999 when her youngest daughter was diagnosed with SM and CM. Karen has been an active volunteer for ASAP for many years and both of her daughters are members of ASAP's Kids For A Cure Club.
A registered nurse in the states of Virginia and New York, Karen brings to the board fifteen years experience in home health care, medical-surgical, and peritoneal dialysis. She is currently employed as a telephone triage nurse.
Karen exemplifies the spirit of caring by offering support to newly diagnosed families and those struggling with issues relating to SM/CM. Caring for her daughter has provided on the job training in the areas of adaptive equipment, coping strategies, and alternative methods of pain relief such as acupuncture and massage therapy. She has learned to deal successfully with the school system in order to provide her daughter with necessary modifications and is always willing to share her knowledge with others.
Karen is also a volunteer and strong supporter of Canine Companions for Independence. Her family is the proud caregiver of Lace, a Labrador retriever who provides assistance and companionship for Kimberly.
Karen is excited to be a part of the ASAP Board of Directors and is looking forward to seeing ASAP grow and expand.
Directors At Large
Barbara Banick
Email: BaBanick@bellsouth.net
Barbara is the Managing Partner of Banick Associates, an Executive Search firm she founded in 1994, specializing in sales and marketing candidates for the technology industry. Prior to BA, Barbara spent 4 years with Compaq Computer in Houston, TX and 7 years with Exxon Office Systems in Stamford, CT as a Marketing Executive. She holds a BA in Mass Communications.
Barbara was born with spinabifida and was operated on at 3 months of age. While she has lived with repercussions of spinabifida, she was lucky that her father chose the young doctor he did to perform the surgery as she remains ambulatory to this day. Dr. Barth Green, a former member of the ASAP Medical Advisory Board, told her that if the surgeon had gone any deeper, there would have been a far different outcome.
In 1993, Barbara fell several times for no seeming reason so she saw a neurologist, had an MRI and was diagnosed with Chiari. That doctor recommended immediate brain surgery. Since Barbara was in no pain and only fell a few times she opted to not have the operation and instead be watched over carefully. She made the right decision, as there were no changes for the next 9 years. Then in 2002, she had 3 episodes where she couldn’t feel the left side of her body including her foot, arm and hand and she was dragging her leg. An MRI revealed syringomyelia.
Dr. Green brought in the pediatric neurosurgeon on his team who reviewed the files and determined that surgery would not only not help but might make the situation worse. Dr Green told Barbara that she would have to deal with any symptoms, that there might or might not be future episodes and any of them could be permanent. He then referred her to ASAP where she talked to Patricia and obtained a lot of valuable information.
In 2004, the ASAP conference was held in Miami, FL and Barbara volunteered to get items for the auction. It was the first time in ASAP’s history that support was obtained from major companies such as Carnival Cruise Line, Tiffany, Jay Strongwater, the Miami Dolphins and the Miami Heat. It was also the first time that snacks were provided at the conference, donated by Publix Supermarkets.
Elected to the Board of Directors in November 2010, Barbara is looking forward to increasing awareness and helping ASAP grow. She is serving on the Revenue Generation and Governance Committees and is working with the Conference Committee to obtain auction items for the upcoming event.
John Caemmerer
Email: jjcaemm@yahoo.com
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 was introduced to the organization after being invited to a fundraising walk by a longtime friend. He was moved by the personal stories he heard that day and made the offer to assist with future events. With a background in sales, he was helpful in promoting and assisting fundraising events. After volunteering for a couple years and becoming more involved he was asked to join the Board of Directors.
John is currently serving on several committees with a special interest in fundraising and raising awareness.
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.
Kerry Chu
Email: Kerryrose1205@yahoo.com
Throughout her life, Kerry suffered from headaches. During her junior year in college, she had a bad fall out of her bunk-bed and slowly started experiencing additional symptoms: more intense headaches, loss of vision, floating black spots, intense tingling in her hands and feet, dizziness, vertigo, balance issues and difficulty focusing. The moments she remembers most of her college graduation weekend from Providence College were her continuous episodes of vertigo and weakness. After the usual battery of diagnostic tests and multiple doctor opinions, Kerry made the decision to have surgery in November of 2004.
It wasn’t until July of 2008 that she attended her first ASAP conference. That was when she met Patrice Schaublin (current Board President). The next summer Patrice asked Kerry if she would be willing to lead a support group on Long Island. Kerry was thrilled to be given this opportunity as she knew how alone and scared she felt upon her own diagnosis. The group has since been meeting monthly.
During Kerry’s surgical recovery, she told her husband (then boyfriend), Bernard, "If I can survive brain surgery, I can run a marathon.” Since September of 2008 she has run six marathons and two half marathons including New York City in November of 2010. Kerry ran the NYC Marathon in honor of her Long Island support group and raised over $5,000 for ASAP.
Although Kerry is moving to Texas, she feels strongly that the Long Island Support Group will remain strong and continue to grow under new leadership. She will miss her members deeply but they know she will keep in touch and always be a “go-to” support person for them. Kerry looks forward to developing a group in Houston and working on ASAP’s Support Group Committee to assist current and new leaders across the country.
John Heiss
Medical Advisory Board Chair
John D. Heiss, M.D. is the Head of the Clinical Unit of the Surgical Neurology Branch, National Institute of Neurological Diseases and Stroke (NINDS), National Institutes of Health (NIH), in Bethesda, Maryland.
Shortly after Dr. Heiss came to the National Institutes of Health in 1991, he and his mentor, Dr. Edward Oldfield, designed a clinical study to better understand the mechanism involved in the development of syringomyelia in patients with Chiari I malformation. This study resulted in a series of papers that helped to explain the process. He subsequently developed research protocols to study syringomyelia not associated with the Chiari I malformation and to study the genetics of Chiari I malformation. Dr. Heiss joined the Institutional Review Board (IRB) of the NINDS in 1998 and became Vice-Chairman in 2002. In 2007, Dr. Heiss became Head of the Clinical Unit of the Surgical Neurology Branch. He also has the rank of Clinical Professor of Neurosurgery at George Washington University Medical School.
Board certified in neurological surgery, he performs neurosurgical procedures for adult patients with syringomyelia that are participating in clinical research protocols at the NIH. Dr. Heiss is a frequent speaker at ASAP conferences and has served on the ASAP Medical Advisory Board (MAB) since 2006. He was appointed Research Committee Chair in 2008 and is now serving as Chair of the MAB.
Robert Keating, MD
Research Committee Chair
Chief of Neurosurgery at Children’s National Medical Center, Dr Keating joined the ASAP Medical Advisory Board in March 2009. After speaking at both the 2008 and 2009 ASAP conferences, he received excellent reviews by attendees for his presentations.
A world-renowned pediatric neurosurgeon, Dr. Keating is called upon by peers around the country and world to consult on best practices. He recently served on the pediatric neurosurgery peer advisory committee to US News & World Report regarding its "Best Hospitals" ranking. Washington Magazine has named him as Top Doctor in 1999, 2002, 2005 and 2008.
He is the author of two of the leading texts in the field: "Tumors of the Pediatric Centeral Nervous System" and "An Atlas of Orbitocranial Surgery," as well as the author of numerous research papers and abstracts. Dr. Keating’s areas of expertise include brain tumors, traumatic brain injuries, craniofacial anomalies, chiari malformations, and spinal dysraphism, including spina bifida and tethered cord.
Dr. Keating leads one of the largest pediatric neurosurgery teams in the region and is a professor of Neurosurgery and Pediatrics at George Washington University, School of Medicine. In 2006, Dr. Keating served as the lead surgeon for the 19-hour successful separation of Mateo and McHale Shaw, who were born conjoined at the lower back and spine.
Erol Veznedarogle, MD, FACS
Dr. Erol Veznedaroglu is director of Neurosciences and Endovascular & Cerebrovascular Neurosurgery at Capital Health. He was formerly director of the Division of Neurovascular Surgery and Endovascular Neurosurgery and director of the Cerebrovascular Fellowship Program at Thomas Jefferson University Hospitals.
Following his fellowship training in cerebrovascular/neurointerventional neurosurgery and neuro-critical care at Thomas Jefferson University Hospital for Neuroscience, he became a nationally recognized endovascular and cerebrovascular neurosurgeon in the treatment of aneurysms, arteriovenous malformations, stroke and other potentially fatal conditions of the brain. Dr Veznedaroglu’s expertise includes skull base vascular neurosurgery and he is one of the most experienced physicians on the East Coast in providing patients with expert diagnosis and treatment for structural defects such as chiari malformations.
Dr. Veznedaroglu has designed and invented coils for the treatment of wide-necked aneurysms. He was the first doctor in the mid-Atlantic region to use the wingspan stent system, the first FDA-approved stent used to open clogged arteries in the brain. He is also one of only a few physicians in the nation chosen by trial investigators to treat aneurysms with a "glue-like" substance called Onyx HD500. This substance is injected into an aneurysm where it quickly solidifies and cuts off the area's blood supply to prevent a potentially fatal burst.
Dr. Veznedaroglu was also the first in the region to use the Merci Retriever and Penumbra devices as well as the Cordis Enterprise Stent. A corkscrew-like device that removes blood clots in the brain caused by stroke, the Merci Retriever increases blood flow to the brain and limits the amount of brain damage caused by stroke, allowing patients to recover faster with less permanent stroke impairments. While the Merci Retriever pulls the clot out, Penumbra is a tiny vacuum device that sucks up the blood clot and restores blood flow to the brain. The Cordis Enterprise Stent treats patients with wide neck aneurysms through a specially designed microstent that allows aneurysms to be treated through a minimally invasive surgery without opening the skull. In addition to leading these and many other innovative best practices in stroke and cerebrovascular care, he is the only physician in the region who can proctor and train other physicians across the country on these same devices.
Dr. Veznedaroglu is the primary investigator of numerous clinical and basic science studies related to cerebrovascular disease. Dr. Veznedaroglu is a nationally recognized academic leader in the area of cerebrovascular care. He has written chapters and articles in various publications that are used as data for his colleagues across the country, and he is invited to lecture and chair at international conferences for physicians around the world. He joined the ASAP Board in July of 2010.