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Physician lectures and advocacy workshops for patients and caregivers on how to be an effective advocate in local communities and in day-to-day life, from the leading experts and advocates in the field .

We have an exciting line-up of speakers, presentations and workshops at Neuro Connect Summit 2019!


Petra Klinge, MD is an internationally renowned general neurosurgeon specializing in the surgical treatment of patients with brain tumors, hydrocephalus and Alzheimer’s disease, pediatric diseases and treatment of congenital diseases like Chiari and spinal malformations with a special interest in occult tethered cord.

Dr. Klinge is an attending neurosurgeon and associate professor at Brown University in 2009. Prior to that, she was a professor of neurosurgery at the Medical School Hannover, Germany. She received her medical degree at the University of Kiel in 1993 and completed her neurosurgical residency at Hannover Medical School in Germany in 2002. She was senior associate professor of neurosurgery at the International Neuroscience Institute in Hannover, Germany, where she had the opportunity to be educated by Professor M. Samii, a founder of modern skull base surgery.

Dr. Klinge is an active member of the American Association of Neurosurgeons and the Congress of Neurological Surgeons. She is editor in chief of the Elsevier journal Interdisciplinary Neurosurgery: Advanced Techniques and Case Management (INAT) and associate editor of Clinical Neurology and Neurosurgery (CNN). She also serves as a reviewer for international scientific journals including Neurosurgery, Journal of Neurosurgery, Journal of Neurology, Neurosurgery & Psychiatry and others. She is a past president of the International Society for Hydrocephalus and CSF disorders.

Dr. Klinge’s scientific interests comprise the development of advanced techniques for diagnosing and treatment of dementia, experimental work to advance the understanding of normal aging and dementia and to develop novel biotechnical treatment approaches including stem cell therapy. Her scientific publications are listed by the US National Library of Medicine.

Dr. Klinge has many honors. Her awards, memberships and publications are far too long to list. 




Dr. McCallum, a native of Brisbane, Australia, attended the University of Queensland and the Queensland Medical School.earning his bachelor's degree and his M.D. He served a rotating internship at the Charity Hospital in New Orleans LSU service, and his residency in categorical internal medicine at Barnes Hospital, Washington University in St. Louis, Missouri. Dr. McCallum had fellowship training in gastroenterology at the Wadsworth Veterans Hospital and the University of California in Los Angeles. Following his fellowship, he was appointed, director of GI endoscopy and assistant professor at UCLA. In 1976, Dr. McCallum went to Yale University School of Medicine, Yale-New Haven Veterans Administration Hospital where he served as director of the gastroenterology diagnostic laboratories and rose to associate professor.


Dr. McCallum was recruited to the University of Virginia in September 1985 to become the Paul Janssen Professor of Medicine, and chief of the division of gastroenterology, hepatology, and nutrition for ten years. He then accepted the position of professor of medicine, chief of gastroenterology and hepatology at Kansas University Medical Center where he was also director of the Center for GI Nerve & Muscle Function & GI Motility. He was elected to the American Society for Clinical Investigation and is also a fellow of the American College of Physicians, the Royal Australasian College of Physicians, and the American College of Gastroenterology. Dr. McCallum has published more than 390 articles in peer-reviewed scientific journals, 100 textbook chapters, and has edited 13 scientific textbooks. The most recent textbooks that he has co-edited are entitled "GI Motility Testing – A Laboratory and Office Handbook," a reference text in this field and "Gastroparesis: Pathophysiology, Presentations, and Treatment." He serves on the editorial boards of eight scientific publications and committees of the major gastroenterology associations in this country. He was president of the Southern Society for Clinical Investigation, International Electrogastrogram Society, Trustee of the American College of Gastroenterology, and received the Southern Medical Association Award for Original Research. Pharmaceutically supported research is conducted by his research team and original research has been supported with VA Merit Reviewing funding, Pharmaceutical, American Diabetes Association, Foundation Grants, Small Business NIH Awards and most recently NIH Grant funding as part of the NIH Consortium in Gastroparesis.


Dr. McCallum's research has been focused on the physiology, pathophysiology, and pharmacology of gastrointestinal smooth muscle relating to disorders of motility and functional bowel disease involving the esophagus, stomach, small bowel, and colon. He has been continuously funded by the NIH, American Diabetes Association, and industry grants. He has made major advances in diagnosis and treatment of gastroparesis, especially in diabetes. As founding chair of medicine, he built a nationally competitive department of medicine at TTUHSC El Paso, as well as advancing research funding and starting fellowship programs. For the last 20 years, his pioneering efforts in the area of electrophysiology of the gut and, specifically, electrical pacing of the stomach resulted in new therapeutic concepts for nausea and vomiting. Other research contributions that continue are in the recognition of cyclic vomiting as a major new etiology of nausea and vomiting in adults, diagnosing and treating dumping syndrome and rumination syndrome as well as other gut motility problems, such as anorectal motility disorders and irritable bowel and the spectrum of small bowel bacterial overgrowth. Developing new pharmacologic and medical device therapies for these entities are also ongoing projects.

Neurogastroenterology & Motility


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Dr. Mark Luciano is the director of the Johns Hopkins Cerebral Fluid Center. A renowned leader in treating hydrocephalus, Dr. Luciano is distinguished both nationally and internationally for his research and educational and clinical work in neuroendoscopy.

Dr. Luciano treats adults with hydrocephalus, pseudotumor cerebri, intracranial hypotension, Chiari malformations, and cerebral and spinal cysts. He has significant expertise in treating children and adults with cerebrospinal fluid leaks and congenital disorders.
Among his accomplishments in neuroscience research and biomedical engineering are his investigation of the cerebrovascular response to hydrocephalus and the invention of a unique device for control of intracranial pressure (ICP) pulsatility to increase blood flow. His National Institutes of Health-funded studies have explored prolonged compression and hypoxia in the brain as a result of hydrocephalus, as well as the interaction between cerebrospinal fluid and vascular systems.



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Dr. Abdallah is a certified pediatric cardiologist and Director of the Children's Heart Institute in Herndon, Virginia. After receiving his medical degree from the University of Jordan in 1984, Dr. Abdallah completed his internship at University Medical Center Acute Pediatrics in 1987 and his residency at the University of Florida in 1989.  Dr. Abdallah completed a fellowship in pediatric cardiology at St. Christopher's Hospital for Children from 1990-1993.  He is board certified by the American Board of Pediatrics, the American Board of Pediatric Cardiology and recently became certified in autonomic neurology.

Dr. Abdallah's hobbies include gardening, travel and foreign languages.

Pediatric Cardiologist & Autonomic Neurology 



Dr. Heiss is Head, Clinical Unit, in the Surgical Neurology Branch, NINDS, at the National Institutes of Health in Bethesda, Maryland and Clinical Professor of Neurosurgery, George Washington University, Washington, DC. He is the Principal Investigator of clinical research protocols that examine the pathophysiology of syringomyelia and the genetics of Chiari I malformation. He is Vice-Chair of the NINDS Institutional Review Board and former Chairman of the Surgical Administrative Committee.

An expert in surgery for brain tumors, syringomyelia, and epilepsy, Dr. Heiss has lectured extensively on various topics in neuroscience and neurosurgery, and has published dozens of original research papers, review articles, and abstracts based on his research. He has served on grant review panels for the National Cancer Institute. Dr. Heiss is board certified in neurological surgery by the American Board of Neurological Surgery.




Dr. Chopra completed his Residency in Anesthesia and Critical Care Medicine and Fellowship in Pain Medicine, Harvard Medical School in 2001. During his training, he was awarded the John Hedley-Whyte Prize in Critical Care Medicine and the Nancy Oriol Prize in Obstetric Anesthesia. He was the Chief Fellow during his fellowship training in Pain Medicine. He is Board certified both in Anesthesia and Pain Medicine.

He is currently the Director of the Interventional Pain Management Center in RI. He holds the position of Clinical Assistant Professor in the Department of Medicine in Brown Medical School, RI. He is an Assistant Professor (Adjunct) at Boston University Medical Center.

He is an active member of the American Society of Interventional Pain Physicians and is vice president of the RI branch. He has been on the editorial board of several peer-reviewed journals and is a reviewer for several more peer review journals.

He has a special interest in pediatric pain, neuropathic pain, Ehlers-Danlos Syndrome, and RSD. He has several publications and books to his credit.

Anesthesiologist & Pain Management



Fraser Henderson was the foreman on a cattle station in the Outback of Australia before receiving his Bachelor’s and Medical degrees at the University of Virginia, Charlottesville VA. He served for with the Multi-National Peace Keeping Force in Beirut, earning the Navy Commendation Medal for treatment of mass casualties following the terrorist bombing attack in Beirut, Lebanon, October 1983. After completing his residency under Phanor Perot at the Medical University of South Carolina, he returned to complete his active duty obligation at the National Naval Medical Center, Bethesda, MD, as Director of Spine. He was Brigade Neurosurgeon for the 4th Marine Expeditionary Brigade in Desert Shield and Desert Storm during the 1st Gulf War. He then completed a fellowship in Craniospinal surgery under Professor Alan Crockard at The National Hospital for Neurology and Neurosurgery, Queen Square, London.

Finishing his tour with the US Navy, Commander Henderson joined Georgetown University, in Washington D.C. as Director of Neurosurgery of the Spine and Craniocervical Junction. He was Co-Director of the Lombardi Neuro-Oncology Division, Co-Director of the CyberKnife Radiosurgery Center, and Medical Director of the Neuroscience Nursing Units. He was Professor of Neurosurgery and Radiology at Georgetown University, where he was active in advancing CyberKnife radiosurgery for treatment of complex spinal tumors. He developed intellectual property for three inventions relating to spinal radiosurgery and spinal cancer and was Principal Investigator in the translational development of a radio-sensitizing drug, and a drug to block the malignant invasiveness of Glioblastoma Multiforme. He received the AANS/CNS Award for Excellence in Spine Research in 2007.

Dr. Henderson entered private practice in Chevy Chase, Maryland, as Director of Neurosurgery at Doctors Hospital and Director of the Chiari Syringomyelia Foundation Greater Metropolitan Washington Chapter, where he is focused on the development of the understanding and treatment of deformity induced injury to the brainstem and spinal cord in Chiari Malformation and Ehlers Danlos Syndrome. He was the recipient of the Annual Physicians award at The Adventist hospital at Shady Grove in 2011. He is the inventor of 11 new devices and concepts relating to disorders of the brainstem and spinal cord, has published over 55 peer-reviewed articles and book chapters, and given over 140 invited lectures with a focus on craniocervical disorders, Chiari malformation, cancer, radiosurgery and unusual problems of the spine. He serves on the Executive Board of the CSF, EDNF, ILC and TCAPP foundations. Dr. Henderson lives with his wife, Becky, and three sons- Fraser, Lansdale, and Landon- on a farm in Prince Georges County, Maryland. 


Fraser Henderson, MD

Lynn Julian, AKA CCG Pop Superhero, freed women from the mold that holds them captive & broke the mold of the female Pop Star on 30+ CDs. "Nashville's Version of Fiona Apple,” ROLLING STONE. A disabling 2006 stage accident left Lynn in a wheelchair and learning to walk again for 6 years. In 2012, she began acting in short films. On 4.15.2013, Lynn survived the Boston Marathon attack, with brain Injury, hearing loss and a renewed sense of purpose, finishing the 2014 Boston marathon. Residing in Boston’s Back Bay, Lynn Julian is involved in regional film projects & charities. http://BostonActress.org


Lynn and her Service Dog, Dr. Bugsy Smallz, find purpose in helping others and hope to inspire us to never give up. "I went from a wheelchair to walking again, to finishing the Boston Marathon. Discover strength through unity. Together, we can achieve anything!" 


Speaker, Author, Patient Advocate, Actress, Boston Marathon Bombing Survivor, Consultant:


Lynn Julian Crisci wears more hats than a Hydra has heads: Survivor (Boston Marathon Bombing, 4/15/13); Author & Speaker in 6 books & 100s of articles (http://linkedin.com/in/lynnjulian); Boston Actress (http://BostonActress.org); Pop Superhero on 30+ CDs (http://PopSuperhero.com); SEO Consultant; Advisory Board Member & Patient Advocate for many organizations (Strength To Strength,http://StoSglobal.org; US Pain Foundation, http://USPain.org; National Fibromyalgia Assoc. FNaware.org; Brain Injury Assoc. of America, http://biausa.org; Hearing Health Foundation, http://hearinghealthfoundation.org; Ehlers Danlos Society, http://Ehlers-Danlos.com; Leaftopia,http://DispensaryLocation.com).



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Kathleen is a graduate of Widener University Commonwealth Law School and currently practices law in MA. Jon Rodis is the President of the Massachusetts Chapter of the Marfan Foundation and chair of the chapter’s Physician Awareness Committee for Marfan and Ehlers-Danlos syndromes. In addition, he is the founder and co-head of the Ehlers-Danlos New England/Massachusetts Support Group. Jon is a National Disability and Medical Advocate for Rare Disorders and serves on the Winthrop Disability Commission. He also serves on the Ambry Genetics Advisory Board and is also a member of the Dysautonomia Support Network’s Board of Directors. Together they speak nationally as disability advocates. 

Disability Law & Advocacy 




Patricia teaches and specializes in treating patients with connective tissue disorders, Chiari malformation, tethered cord, and dysautonomia. As a manual physical therapist, she focuses on correcting alignment and imbalance with gentle maneuvers and techniques that accommodate for connective tissue issues. Her skillful techniques and ability to assess her uniques patient population often enhances strengthening and maximizes the bodies natural ability to heal. 

Trish enjoys competive dancing on a national level in her spare time.

Physical Therapy



Joanna is an Occupational Therapist and dysautonomia patient. She currently works at Messiah College in the OT Program where she is the Academic Fieldwork Coordinator and Lecturer. She also works part time clinically at an inpatient rehab hospital. Joanna has presented previously at the PA OT State Conference (POTA) on the role of OT in managing dysautonomia symptoms . She is excited to share the benefits of OT for people with chronic fatigue from illness.

Joanna lives in York, PA with her husband and enjoys volunteering and traveling in her free time.

Occupational Therapy


Dr. Michael P. Healy has been a practicing physical therapist and advanced manual therapist for the past 32 years. He is the Owner, President, and CEO of Healy Physical Therapy & Sports Medicine, Inc., with 4 clinics located in Rhode Island, USA. He is a national and international lecturer on Advanced Manual Therapy, Chronic Pain, Connective Tissue Disorders, such as; Ehlers-Danlos Syndrome, Craniocervical Instability, Chiari Malformation, Marfan’s Syndrome and Syringomyelia. He is on the medical advisory board of The Coalition Against Pediatric Pain (TCAPP) and The Quality of Life Expert Panel for The Marfan Foundation. His specialty is advanced manual therapy by utilizing osteopathic practices and evidence-based functional exercise. He has been treating patients with Ehlers-Danlos Syndrome and Marfan’s Syndrome since 1997.

Dr. Healy graduated from the University of New England with a Bachelor of Science Degree in Physical Therapy, 1986, Bryant University with a Masters of Business Administration, 1997, Osteopathic College of Ontario with a Doctorate/Diplomate in Osteopathic Manipulative Theory & Practice, 2008, Simmons College with a Doctorate of Physical Therapy, 2012-2013 and Integrated Osteopathic Manual Therapist Certification, 2017.

Panel Discussion Moderator

Michael Healy DPT

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​Kerry Devlin, MMT, MT-BC, is a neurologic music therapist and Clinical Director of Annapolis Music Therapy Services. She believes strongly in the importance of presuming competence and celebrating neurological differences, which she strives to achieve through her diverse clinical work with children, adolescents, and adults. Kerry holds a Master of Music Therapy (MMT) degree from Shenandoah University (2017), completed the Professional Studies Program for Music Therapy Certification Eligibility at Shenandoah University (2014), and holds a BM in Voice Performance from Towson University (2012). Kerry serves as Public Relations Chair on the executive board of The Musical Autist, a non-profit organization dedicated to autism acceptance and self-expression through community music therapy programming. She is adjunct faculty in Music Therapy at Shenandoah University and in Music Education at Peabody Conservatory and currently works as a consultant for the Johns Hopkins Center for Music & Medicine on a number of research projects. Kerry's research has been published in the journal Music Therapy Perspectives. Kerry is also a proud zebra, and lives with Ehlers Danlos Syndrome and POTS.

Neurologic Music Therapist


Understanding firsthand the challenges that life with connective tissue disorders and neurologic conditions bring, Amanda has combined her professional and personal experience as an advocate and proven leader. Her background as a patient, caregiver, nurse, non-profit leader, social media influencer and business consultant has allowed her to develop unique insight that drives her to quest to improve the patient experience. Her highly collaborative style and ability to relate to many audiences allow her to
advise, educate and effect change while unifying and amplifying the patient voice globally as the founder and President of the Dysautonomia Support Network. Amanda is also the co-creator of the Neuro Connect Alliance, a member of the CSF Chiari Consensus Steering Committee, a Facebook Power Admin Mentor and was recognized nationally by Facebook for her first support group Dysautonomia Divas, Dudes & Zebras in 2016 at the Facebook Community Summit in Chicago Illinois. She enjoys public
speaking and sharing her experiences in hopes to inspire others to pursue their passions despite limitations. In her free time, she enjoys time with her family, traveling, learning and exploring.

Health Care Advocacy



Dr. Sarah Merritt is originally from Huntsville, Alabama.  She attended Birmingham-Southern College and medical school at the University of Alabama in Birmingham.  After a residency in anesthesiology at the University of North Carolina in Chapel Hill, she elected to pursue extra fellowship training in pain management at the Johns Hopkins Medical Institute.  Her training included the full spectrum of pain management techniques, including interventional pain blocks and injections, as well as pain medication management.  Dr. Merritt is ABMS Board-Certified in Anesthesiology and Pain Medicine.

Currently, Dr. Merritt is active as a volunteer in the medical community in addition to her medical practice.  She was nominated by her peers and appointed by the state as a member of the Technical Access Committee for the Maryland State Prescription Drug Monitoring Program (PDMP).   She is also the Co-Chairperson of the Legislative Council for MedChi, the Maryland state medical society.

In her spare time, she enjoys spending time with her family, bicycling, running, and yoga.

Anesthesiologist & Pain Management


Taylor Kane is the founder and CEO of the non-profit organization, Remember the Girls, an international support and advocacy group which unites, educates and empowers female carriers of rare genetic disorders--a group which is underrepresented and often overlooked by the medical profession. Taylor learned that she was a carrier of the rare genetic disease Adrenoleukodystrophy (ALD) after her father died from the disease when she was five years old and has been a fierce advocate ever since, having helped raise more than $250,000 for ALD research. In 2013, she successfully lobbied the New Jersey legislature and Governor to enact a law requiring the screening of newborns for ALD, as the disease can only be cured if treated before symptoms develop. Shortly thereafter, she founded a campaign called YAC (Young ALD Carriers) to support young females who carry the gene for ALD and to assist them in effectuating positive change through advocacy, social media, and the legislative process. The campaign has attracted young ALD carriers from around the world, and currently has members from as far away as South Africa and Estonia. In addition, she currently serves as a leader of the Young Adult Representatives of the EveryLife Foundation for Rare Diseases, educating young adults with rare diseases to advocate for more affordable, safe, and effective treatments. Taylor is an accomplished speaker, an author, and an award-winning activist. She is presently a junior at The George Washington University, where she is pursuing a degree in Political Communication and a double minor in Public Policy and Women’s Studies.

Political Advocacy


Health Communications Specialist at the National Institute of Nursing Research, part of the National Institutes of Health. She oversees an evidence-based health communications campaign, Palliative Care: Conversations Matter®, to increase awareness of and communication about pediatric palliative care. Involved in the development and launch of the campaign, Adrienne worked closely with parents and palliative care clinicians, scientists and professionals to conduct formative research, create a campaign brand, develop multi-media resources, and test and evaluate materials.  


Prior to joining NINR, Adrienne designed and implemented strategic marketing plans for statewide nutrition programs and conducted research on pediatric overweight prevention. She has a Masters of Health Science degree from Johns Hopkins Bloomberg School of Public Health and a Bachelor of Arts degree in Communications from Loyola University Maryland. Adrienne has co-authored several papers which have been published in peer-reviewed journals and is a three-time recipient of NINR Director’s Awards.

Palliative Care


Dr. Svetlana Blitshteyn is a neurologist specializing in autonomic disorders. She is the Director and Founder of Dysautonomia Clinic, where she provides consultations for patients with POTS, neurocardiogenic syncope, small fiber neuropathy, chronic fatigue syndrome, fibromyalgia, Ehlers-Danlos syndrome, mast cell activation syndrome, chronic migraine and other neurologic conditions. She also serves as a Clinical Assistant Professor of Neurology at the University at Buffalo Jacobs School of Medicine and Biomedical Sciences.

Dr. Blitshteyn completed her neurology training at Mayo Clinic Graduate School of Medicine. She received her Medical Doctor degree from the University at Buffalo School of Medicine where she received numerous awards for academic achievement. She graduated from the University at Buffalo Honors College with a Bachelor of Science in Biochemistry, Summa Cum Laude, where she was the valedictorian of her graduating class.



Lara Bloom is the international Executive Director of the Ehlers-
Danlos Society and responsible for globally raising awareness of
rare, chronic and invisible diseases, specializing in the Ehlers-
Danlos syndromes, hypermobility spectrum disorders (HSD) and
related disorders. Lara manages coordinated medical collaboration,
raising funds for research and focus on global progression,
education and awareness.
Lara speaks at conferences all over the world, lectures to medical
students and professionals and supports specialists in the field by
offering her experience as a leading patient expert in rare diseases. 

Lara's current advocacy work includes:
- Rare Disease UK - Patient Empowerment Group member
-Rare Diseases International - Advocacy Committee member
-NIHR CONCORD: CO-ordiNated Care Of Rare Diseases - Co-
-European Reference Network Groups RECONNECT & VASCERN
- Patient Expert
-GenTAC Alliance Patients - Families, and Clinicians Working
Group member
-PARADIGM & EPF - Expert Advisor
-Medicines and Healthcare Products Regulatory Agency Patient
Group Consultative Forum Member
-EUPATI Fellow

International Advocacy

Lara Bloom

Dr. Cathryne Maciolek is a clinical psychologist who has been in practicing for 15 years. Cathryne graduated with a Master’s Degree from Johns Hopkins University and completed her doctorate from the American School of Professional Psychology. Cathryne trained under Dr. Ronald Siegel, a Harvard Professor who specializes in managing chronic pain and learned to use mindfulness and acceptance to treat chronic pain conditions and the anxiety and depression that often occur co-morbidly. After working for a variety of hospitals and outpatient centers, in 2015 Dr. Maciolek founded and operates The Mandala Center, a Behavioral Health & Wellness Center in Baltimore MD. Dr. Maciolek focuses on providing holistic and integrated treatment to those managing behavioral health and physical health conditions. Her special interests include using meditation and mindfulness to help individuals diagnosed with co-occurring physical and emotional difficulties, such as infertility, chronic pain, and diabetes, as well as supporting individuals on a fixed income maximize care in the behavioral health care system. She has triplet 5-year-old girls and an 8-year-old son and after chasing her children, she can be found painting, exercising, or party planning.


Cathryne Maciolek, PsyD

Michelle Wilson is a Speech-Language Pathologist certified by the American Speech-Language and Hearing Association. She is a graduate of the New England Conservatory where she studied vocal performance, and Towson University where she studied speech-language pathology, specializing in voice. Her clinical interests include voice disorders of the speaking and singing voice, head and neck cancer rehabilitation, and dysphagia. Ms. Wilson also serves as an assistant music director for the Parkinsons, a Baltimore-based chorus for adults with Parkinson’s Disease, and participates in clinical research through the Johns Hopkins Center for Music and Medicine.

Clinical Interests

  • Head and Neck Cancer Rehabilitation

  • Singing Voice Rehabilitation

  • Swallowing Disorders

  • Voice Problems

Professional Memberships
American Speech-Language and Hearing Association (ASHA)
ASHA Special Interest Group 13: Swallowing and Swallowing Disorders, American Speech-Language and Hearing Association
ASHA Special Interest Group 3: Voice and Voice Disorders, American Speech-Language and Hearing Association


  • CCC-SLP, American Speech-Language and Hearing Association

  • Licensed Speech-Language Pathologist, State of Maryland Board Of Audiologists, Hearing Aid Dispensers & Speech-Language Pathologists

Speech Language Pathologist 

Michelle Wilson,M.M, M.S., CCC-SLP

Jim Cavan, CEO & Founder of Backpack Health health, start-up entrepreneur, has served in a variety of executive leadership roles for healthcare institutions and organizations for more than twenty years. Starting his healthcare career in the field of emergency medicine, he served in hospital and aviation-based settings. Having
developed a passion for clinical research, he was a founding member and the director of the Institute of Clinical Research at the University of Medicine and Dentistry, coordinating the clinical research and clinical trials within the UMDNJ network. Building upon this, Jim later became the Executive Director of Research and Advanced Project Development at Drexel University’s College of Medicine, while simultaneously acting as a member of the College of Medicine’s Strategic Planning Committee. In 2005, Jim joined CORRONA LLC, a medical research company, as President and COO. After eight years with CORRONA, Jim shifted his focus to build Backpack Health, where he currently serves as CEO. Jim is working in this role to empower global patient communities by increasing health data accessibility. With Backpack Health, Jim combines his background in research with his passion for patient advocacy, providing healthcare data accessibility to patient communities, and nurturing research efforts of healthcare organizations with the patient data needed to develop new understandings and treatments for rare disease communities.

Health Technology Strategist

Jim Cavan

Courtney Williams is a Communications Manager at Society for Industrial and Office Realtors in Washington, DC and is a Media Communications graduate from George Mason University in Fairfax, VA. She grew up in the Air Force and has lived in the Northern Virginia area since 2006. Williams has been living with an unknown autonomic nervous system disorder for the last 15 years in which at any point, she will lose consciousness and her system “reboots,” slowing her breathing and stiffening all of the muscles in her body until she resumes consciousness as much as 45 minutes later. She has seen some of the top neurologists, all of whom have concluded that the condition is, unfortunately, unknown, however, a major symptom is that her brain sends faulty signals to her perfectly healthy heart.

In 2014, Williams was partnered with Zido (Z-eye-doe), a Cardiac Alert yellow lab from Canine Partners for Life in Cochranville, Penn. Zido monitors her heart rate and blood pressure, alerting her when one of those faulty signals has been sent. These alerts allow her to sit or lay down before she loses consciousness in order to safely allow the episode to pass. Since being partnered with Zido, Williams has been able to lead an incredibly “normal” life, graduating summa cum laude, moving out of the safety of her parents’ home, traveling each day to work in DC, all with the security of Zido by her side.

Williams has been a featured speaker at several Disability Expos and has led informational sessions with children and adults to teach them about the roles that dogs can play in the lives of people with disabilities. In her off-time, Williams enjoys creating various graphic design projects for her church, catching up on the latest Netflix hits, and spending time with her favorite canine companion. She and her husband, Zack, reside in Springfield, VA.

Service Dog Advocate

Courtney Williams

 “Hey everyone, my name is Antonio Maltese and I am a 21-year-old senior political science major concentrating in international relations and minoring in German at Virginia Commonwealth University. I am an active member in the Huntington’s Disease Youth organization after testing positive for Huntington’s and am here representing YARR as a rare disease patient advocate. I have an innate spark to advocate for the underdogs, for people like us, regardless of age, who are affected by some debilitating disease and who feel like they are lost in the sea of the political divide and left to fend for themselves. I’m here today to tell you that that is not the case. I’m here to tell you that with courage, knowledge, hope, and support, we can, and we will voice our needs, we will voice our concerns to Congress, and ultimately we will find better, more effective, and more accessible treatments and cures: there is hope.

Youth Advocacy

Antonio Maltese

Jane Taft is the founder and executive director of POTSibilities Parents, a support network for parents of children with autonomic dysfunction. Based on personal experience, Jane recognized the need for reliable information, resources, and support specifically related to parenting children with autonomic dysfunction, and in 2012, she established POTSibilities. Over the past seven years, POTSibilities has grown to become a global community of over 6,500 parents in a dozen countries.
In the United States, parents of children with autonomic dysfunction regularly face hurdles and issues regarding their children’s education. POTSibilities Parents provides information and resources to help parents advocate for their children’s educational rights and needs.
In addition to providing educational resources, POTSibilities is a platform for parents to support each other and enjoy friendships with other parents who understand the nuances of parenting children with this chronic medical condition. POTSibilities offers several opportunities to socialize, both online and in independent local groups.  Whether it’s an online book club that meets virtually, or a local group of parents and their children meeting for brunch, POTSibilities parents enjoy a special comradery and support system.
Jane holds a BA in International Studies from George Mason University and worked and
volunteered for a number of years in the field of International Student Exchange. Jane’s passion and dedication to education has extended into her volunteer activities; she served as a literacy tutor for English language learners and co-founded the Multicultural Club and annual Multicultural Night in her local elementary school, to create and nurture multi-dimensional interest, respect, and acceptance of diverse cultures. An avid amateur photographer, Jane and her family live outside Philadelphia.

Patient Advocacy

Jane Taft

Dr. Pederson is Professor of Biology at Wittenberg University, where she was awarded the Elizabeth E. Powelson Endowed Chair in Biology at Wittenberg in 2019. With a chronically ill daughter, her research interest have recently shifted to suicidal ideation in people with chronic invisible illnesses. She has published eight papers in the past three years on quality of life issues around chronic invisible illness. She developed a new suicide screening tool for people with chronic invisible illness that is currently in press, and is currently writing a book chapter on suicidal ideation in people with chronic invisible illnesses. Dr. Pederson founded Standing Up to POTS ® in 2014, a couple of years after her daughter was diagnosed with postural orthostatic tachycardia syndrome (POTS). Since its inception in 2014, her family has raised more than $100,000 for POTS research, and Standing Up to POTS has awarded approximately $80,000 to five POTS research teams in four countries. She educates others and advocates for improved quality of life for people with POTS and other chronic invisible illnesses through social media, Facebook support groups, and their foundation website at www.standinguptopots.org.

Family Advocacy

Cathy Pederson, Ph.D.