MDA is a sponsor many other hospitals around the US. Locally it is the sponsor of Johns Hopkins Hospital. The organization assists anyone with the disease whether insured or not by providing specialists such as doctors, and physical and occupational therapists. A Loan Closet, which is a service that loans durable medical equipment such as wheel chairs, bath and shower seats, walkers and hospital beds to persons with the disability, is also available. They also repair medical equipment. They also provide an annual summer camp for kids ages 6-17yrs.They also conduct advocacy and sensitization services through speaking engagements on living with neuromuscular diseases at schools and organizations.
In this vein, they hosted the Make A Muscle Conference today, December 4, 2010 at Howard Community College in Columbia, MD . This free educational seminar was very informative. There was research updates from MDA Clinical physicians, an enlightening Q & A session, presentations on topics such as Legal/Medical Matters, Driving Adaptations, Positive Living, Genetics, and more. For more see below...
Conference Registration Station
The Agenda
Welcome. Thanks for coming to the Make A Muscle Conference. I’d like to thank all of our speakers, presenters and vendors who are joining us. Today you will have the opportunity to hear about the latest research in NMD, hear questions answered by our physician's panel, browse our vendor area and later, attend break out sessions on a variety of topics. It is my hope that you will leave here today with new information, and possibly a few new friends. Please take a few minutes to reach out to another member of the MDA family. It is critical that we band together and support one another as we fight back against NMD. A few of the leaders of that fight are here with us today. Please allow me to introduce our speakers:
Speakers
David Miller attended on behalf of Annie Kennedy
Annie Kennedy serves as the Senior VP - Advocacy overseeing legislative and health policy efforts for the MDA. Representing MDA on national and international policy efforts, she currently serves on more than a dozen advisory committees including the International ALS/MND Alliance, the Duchenne Research Collaboration International, the International Coordinating Committee for the SMA Patient Advocacy Group, the TSA's Disability Coalition, the BIO Patient Advocacy Group, the CDC's ALS/MS Surveillance Project and National ALS Registry, and is a US Project Leader for the International Pediatric Palliative Care in Pediatric Neuromuscular Disease Project. Ms. Kennedy is also responsible for several national initiatives being led by the MDA, including the Transitional Services program, helping young adults transition from pediatric to adult services, both medically and in the community.
The Physicians’ Panel
• CMT/Peripheral Nerve Update - Dr. Charlotte Sumner
Dr. Charlotte Sumner received her medical degree from the University of Pennsylvania School of Medicine following undergraduate studies at Princeton. She then completed an internal medicine internship and neurology residency at the University of California SF. She returned to the East Coast for a neuromuscular fellowship at Johns Hopkins and a neurogenetics fellowship at the National Institute of Neurological Disorders and Stroke. She joined the neurology faculty at Hopkins in 2006. Now an Assistant Professor at Johns Hopkins, Dr. Sumner cares for patients with a variety of neuromuscular disorders. Her practice is notable for a focus on individuals with inherited neuromuscular diseases of peripheral nerves and motor neurons, including SMA and CMT disease. Dr. Sumner's research similarly focuses on inherited motor neuron and peripheral nerve diseases. Specifically, she studies the molecular pathogenesis of different forms of SMA with particular attention to therapeutics development for these disorders. Recent work has explored the efficacy of histone deacetylase inhibitors in the treatment of SMA.
• Spinal Muscular Atrophy Update - Dr. Thomas Crawford
Dr. Thomas Crawford received his medical degree from the University of Southern Cali.fornia. He completed a pediatric internship and residency at the Pediatric Pavilion of the Los Angeles County I USMC, followed by a pediatric chief residency. He completed his training in neurology with special qualification in child neurology at the LA Children's Hospital. He then earned a fellowship with Dr John Griffin at Johns Hopkins in Neuromuscular Disorders. Now an Associate Professor of Neurology and Pediatrics, Dr. Tom Crawford has been a member of the department of neurology since 1987 a'nd is currently co-director of the MDA clinic for Neuromuscular Disorders at Johns Hopkins. Primary research interests involve the basic science and clinical characterization of Spinal Muscular Atrophy. He is also actively involved in the Biology of neurofilaments by characterization of transgenic animal models. He is on the Medical Advisory Committee for the MDA.
• Myasthenia Gravis Update - Dr. Daniel Drachman
Dr. Daniel Drachman received his medical degree from NYU School of Medicine. He then completed an internship in internal medicine at Beth Israel Hospital in Boston Harvard Service and a residency in neurology at the Harvard Neurological Unit at Boston City Hospital. He went on to become a clinical and research associate at NIH. Now a Professor of Neurology at Johns Hopkins, Dr. Drachman is one of the founding members of the department. He founded the Neuromuscular Center, which is one of the largest divisions within the department and is named after him. Dr. Drachman's interests include neuromuscular diseases, immunology, and basic aspects of nerve-muscle interactions and development. He is widely considered to be a leading authority on MG and other neuromuscular diseases that involve auto-immunity. Dr. Drachman produces a large body of work on the causes, mechanisms and treatment of MG, including a number of novel treatments and new genetic therapies for future treatment of MG. Dr. Drachman has served on numerous national committees throughout his career and has held grants from NIH and MDA for more than thirty years, as well as grants from other private and national sources. Dr. Drachman was named the inaugural W.W. Smith Charitable Trust Professor of Neuroimmunology in May 2003.
• Amyotrophic Lateral Sclerosis Update - Lora Clawson
Lora L. Clawson. MSN. CRNP is Director of ALS Clinical Services at Johns Hopkins. Her educational background includes a Diploma in Nursing from the Maryland General Hospital School of Nursing and her Bachelor of Science Degree in Nursing from the University of Maryland. She obtained her MSN from Johns Hopkins and earned her CRNP license in 1999. She then launched the Johns Hopkins Multidisciplinary ALS Clinic on October 4, 1999. Ms. Clawson now specializes in coordinating ALS clinical care management and clinical research studies. Her ALS career began at Hopkins over 20 years ago as a Research Nurse Coordinator. She is the facilitator of the MDA ALS Support Group. Ms. Clawson was the recipient of the Vickie Appel Award for Excellence in ALS Clinical Care. Ms. Clawson was appointed to the faculty of the Department of Neurology in 1998. Now an Assistant Professor, she teaches at the Johns Hopkins University School of Nursing and serves as a mentor and instructor to undergraduate and graduate nursing students.
General Session Updates On:
• Pompe Disease Update
• Muscular Dystrophy Update
• MDA Services
•Teen Group Discussions
•Physician's Panel Question & Answer Session
Breakout Session Facilitators:
James F. Dasinger. PhD is a clinical psychologist who has been in private practice in Reisterstown since 1974. Originally from Montana, he received his doctorate from the University of Montana. In addition to his clinical practice, he has 30 years of experience as a speaker, business consultant and teacher. For 22 years, Dr. Dasinger was the on-air voice of psychology on WBAL Radio 11, where he was known as "Dr. Jim." Dr. Dasinger is also Past-President of the MD Psychological Association, Baltimore Association of Consulting Psychologists, and the MD Society of Clinical Hypnosis.
Lori Erby, PhD. ScM. CGC is an Assistant Scientist at Johns Hopkins Bloomberg School of Public Health and Genetic Counselor at the Prenatal Diagnostic Center. Her primary research interest is in the process of genetic counseling and client outcomes, with a focus on communication to enhance informed decision-making and adaptation. She also has a broad interest in the communication of complex genetics topics outside the realm of genetic counseling, particularly to populations with reduced literacy. Finally, she is interested in the exploration of the psychological and social implications of genetic technologies.
Jason A. Frank. CELA graduated from the NYU School of Law and is President of Frank, Frank & Scherr, LLC. His elder law, special needs and estate-planning practice addresses the legal consequences of age-related and other disabilities. He serves as the Assistant Baltimore County Attorney for the Baltimore County Department of Aging. He authored Elder Law in Maryland and Maryland Medicaid Long Term Care. Mr. Frank co-founded the Elder Law Section of the Maryland State Bar Association and has twice served as Chair of the Elder Law Section Council. He is a member of the Special Needs Alliance and the National Academy of Elder Law Attorneys and has been named a "Super Lawyer" by Baltimore Magazine in 2008-2010.
Margaret Hanagan. APRN. BC. CS-P is a licensed, certified Psychiatric Clinical Nurse Specialist-Nurse Psychotherapist who has been in private practice for over 24 years. She has worked extensively with individuals, couples and families, helping them reach their potential for fuller 1ives and an increased sense of inner peace and contentment. With both a health and psychology background, she is able to assist clients in their joumey to know themselves, to develop their own power to overcome depression, anxiety and helplessness and take back control of their lives.
Kim High OTRIL is an Occupational Therapist who has practiced in a variety of settings including home health, long term care, acute care, and outpatient. As President/CEO of FOF Occupational Therapy Services, LLC, Mrs. High's focus is on driving rehabilitation for the elderly and those with disabilities. Mrs. High has received two Bachelor of Science degrees from Towson University for Community Health Education and Occupational Therapy. She is a current member of the MD Occupational Therapy Association and a former member of the American Occupational Therapy Association.
Rebecca Moffet has been an employee of St. Luke's House, a mental health agency located in Montgomery County, since August 2005 and a Benefits Counselor since February 2008. She completed the Community Work Incentives (CWIC) training through the Social Security Administration in July 2008 and became certified as a CWIC in December 2008. She is also in process of completing a Maryland State Specific Benefits Certification. She recently became SOAR certified - which helps with the application process for SSI and SSDI benefits. She develops and teaches benefits trainings for her colleagues and for other agencies in the community.
Norma Theo Pinette earned her BA from Mount Holyoke College and holds a Masters degree in Applied Behavioral Science from The Johns Hopkins University. She has managed a wide range of nonprofit human service organizations in Maryland and was an advocate for homeless people in Maryland for many years. Since early 2006, Ms. Pinette has been employed in organizations that work to increase independence for people living with disabilities. She was the Executive Director of Volunteers for Medical Engineering beginning in early 2006 and then worked as Executive Director of Learning Independence Through Computers. Early this year, these two organizations merged into V-L1NC.
J. Rose Plaxen is a local author and mother of two. After her second child was born with developmental disabilities, she found very little published information on making her home more adaptable for a disabled child. Plaxen's book, Adapt My World and the website www.adaptmvworld.org are resources for parents, teachers and therapists working with individuals with disabilities. The book contains adaptations to help those with disabilities gain the freedom to pursue their goals by utilizing common and inexpensive household items. In 2005, Rose Plaxen was presented with the Maryland Governor's Award, in recognition of her efforts to empower people with disabilities and their families.
John Walker is a V-L1NC volunteer. As such he is a Project Coordinator. He is an engineer by training and the retired Engineering Coordinator and Instructor at Community College of Baltimore County.
Arista Williams is a parent of a child with muscular dystrophy and comes to us from the Providence Center. The mission of Providence Center is to provide services that allow individuals with disabilities to enjoy increased self-determination in leading a more independent life. These support services are individually designed and professionally managed to enable individuals to exercise higher levels of control over their lives.
Break-Out Sessions:
•The Art of Intimacy - Adults 18 and over Kelly Casey, JHH Sex and relationships for adults
•Increasing Independence with Technology Theo Pinette, V-LincNME Individualized modifications by volunteer engineers
•Medicare: What is all the fuss about? Rebecca Moffet, St. Luke's House What is and isn't covered; how to apply, etc.
•Adapting the World J. Rose Plaxen Homemade adaptations for work, home and school
•Psychological Tools for Positive Living Margaret Hanagan Living your best life; staying positive
• Life after High School - teens/parents Arista Williams, Providence Center Transitioning from HS to college and work
•Tips for Optimal Living - for caregivers Dr. Jim Dassinger Caring for yourself while caring for others
•Genetics of Neuromuscular Disease Lori Erby, JHH Overview of hereditary neuromuscular disease
•Home Modifications 101 Kim High, Focus on Function OT suggestions on home mods for independence
•Special Needs Trusts Jason Frank, Frank, Frank & Scherr Provide for disabled child in case of parents' death
•Legalese Jason Frank, Frank, Frank & Scherr . Power of Attorney, Living Wills, etc.
•Driving Adaptations Kim High, Focus on Function Modifications to continue driving
•Medical/Legal Decision Making Jason Frank, Frank, Frank & Scherr What to consider when planning for the future
•Rookie Drivers Kim High, Focus on Function For those who have never driven
The event was coordinated by Ms. Laurel Gaffney – MDA’s Health Services Coordinator
For information about the conference email baltimore@mda.org or call
Even if you have had a previous bad prognosis in the past, there are now Disney World tests, short term and long term tests. They now have a big bag of tricks as there are many drugs they now use including some to reboot the immune system even on people who would have been gratus. ALS is now more proactive and there’s focused interest.
Closing Remarks
Special thanks to the following sponsors:
Howard Community College
Clyde's of Columbia
The Olive Garden
Anchor PHARMACY & MEDICAL SUPPLIES Affiliated with Carroll Hospital Center
Athena diagnostics
Central Maryland Rehabilitation Center, A Physiotherapy Associates Company
G-ESAPEAKE
REHAB EQUIPMENT
IgG America AmerisourceBergen Specialty Group
DynaVox Mayer-Johnson
Genzyme Genetics
More Pictures of the Speakers
Vendors
I 
Paul Pochekailo
Paul Pochekailo
Genzyme Therapeutics
Note: Genzyme is seeking patients with Pompe disease to assist with their research of new therapies. If you have the disease or if you know someone who has the disease, visit http://www.pompe.com/ or call Genzyme M-F 8am - 6pm EST at 1800-745-4447 (option 2) or 617-768-9000 or email medinfo@genzyme.com
Chesapeake Rehab Equipment
Anchor Pharmacy & Medical Supplies
Respiratory Care Practice/Sales
I Can Eat That http://www.debbiebutton.com/
Mr. and Debbie Button
DynaVox Mayer Johnson
Courtney Moss M.Ed., CCC-SLP, Sales Consultant
Maryland Department of Disabilities
Assistive Technology Loan Program
Lori Markland, Director of Marketing For Telework and Loan Development
Central Maryland Rehab
A Physiotherapy Associates Company
Lauren Geisbert, Doctor of Physical Therapy
Roberts Images
www.robertsimages2.com
Artist & Teacher, Tommy Roberts
Email: tr98images@aol.com
Attendees
More About MDA
MDA combats neuromuscular diseases through programs of worldwide research, comprehensive medical and support services, and far-reaching professional and public health education. With national headquarters in Tucson, MDA has more than 200 offices across the country, sponsors more than 200 hospital-affiliated clinics and supports more than 330 research projects around the world.MDA supports more research on neuromuscular diseases than any other private-sector organization in the world. MDA scientists are in the forefront of gene therapy research and have uncovered the genetic defects responsible for several forms of muscular dystrophy, Charcot-Marie-Tooth disease, a form of amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease), childhood spinal muscular atrophy and several other neuromuscular conditions.
The Association's comprehensive services program includes diagnostic and follow-up medical consultations, flu shots, support groups, MDA summer camps for youngsters, a medical equipment loan program, assistance with equipment repairs and resource referral.
Through its national advocacy program, MDA works to make life better for people with muscular dystrophy and related muscle diseases by providing representation in matters of public policy and research advancement, nationally and internationally; and facilitating active involvement in these areas by the people it serves.
MDA was created in 1950 by a group of adults with muscular dystrophy, parents of children with muscular dystrophy and a physician-scientist studying the disorder. Since its earliest days, it has been energized by its number-one volunteer and national chairman, entertainer Jerry Lewis.
For more information, visit www.mda.org
For ways to assist, visit http://www.mda.org/help/
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