From: ksale@americanbraincoalition.org
Sent: Thursday, July 16, 2009 2:24 PM
To: Root, Candace
Subject: American Brain Coalition Summer 2009 eNEWS

July 16, 2009

American Brain Coalition eNEWSLETTER

 

Letter from Dr. Joseph Coyle, American Brain Coalition Chair

Dear American Brain Coalition Members and Affiliates:

It is an exciting time for the American Brain Coalition, with many new initiatives deriving from the recent Spring Membership Meeting, held in Seattle during the American Academy of Neurology Annual Meeting.  The Board approved the addition of five new Associate Members – the American Academy of Addiction Psychiatry, the American Society of Addiction Medicine, the Childhood Brain Tumor Foundation, the Intracranial Hypertension Research Foundation, and the National Alliance for Research on Schizophrenia and Depression.  A brief biography of each organization is below.  The Board also approved the addition of the Eunice Kennedy Shriver National Institute of Child Health and Human Development as an Observer.

The Board approved seeking foundation and/or corporate sponsorship for a web site renovation, where the American Brain Coalition’s web site can be a tool for the public to obtain information about the brain and its disorders.  This site will include numerous links to the vast amount of information that exists on our members’ sites.  Our ultimate goal would be for this site to be the starting point and the central source for patients, physicians, caregivers, and scientists to go to when they are in need of the most current and relevant information for disorders of the brain.

The Board also approved seeking sponsorship for public relations projects that will link the American Brain Coalition’s name to more brain-related events such as Brain Awareness Week and the International Brain Bee.

Lastly, the Board approved seeking foundation and/or corporate sponsorship for a Patient Advocacy Travel Awards Program and luncheon following the ABC meetings.  This program would allow our members to have the opportunity to network and discuss issues, concerns, and goals.

Lyle Dennis, partner at Cavarocchi Ruscio Dennis Associates and ABC lobbyist, was present during the Spring Meeting and reported on the latest in Congress.  He addressed The American Recovery and Reinvestment Act (ARRA), as well as the omnibus appropriations bill for FY 2009 and science funding for FY 2010.  The American Brain Coalition, which is asking for a 10% increase, is taking the position that we do not want to fall off a funding cliff when the two-year, $10.4 billion ARRA money runs out.  We want strong, sustainable increases.  Discussion moved to comparative effectiveness research.  This area of research compares how the different medications or treatments for specific conditions have worked.   Given its potential impact on patients, and the interest the topic generated amongst attending members, we are in the process of forming a Working Group to determine whether and how the ABC could be involved in this issue.  Next on the agenda was a big picture discussion that began by sharing the results of the advocacy survey conducted in February 2009.  Overall, the survey results showed that not all member organizations share information with their members and that they might not be interested in some of the member benefits the ABC provides.  Dr. Samuels, Advocacy Committee Chair, is eager to understand what the ABC can do to engage our members.  He will be contacting members by telephone to determine your wants and needs from the ABC and its advocacy committee. 

I encourage all members to use the ABC newsletter as a venue for sharing your upcoming news and events.  I also encourage you to share this newsletter with your members, boards, and colleagues.

Sincerely,

Joseph Coyle, MD
American Brain Coalition Chair

 

Highlighted Organizing Member - The American Academy of Neurology


The American Academy of Neurology (AAN) is the world’s largest professional association of neurologists and neuroscience professionals. With more than 21,000 members, the AAN is committed to professional, scientific, and educational excellence.. A neurologist is a doctor with specialized training in diagnosing, treating and managing disorders of the brain and nervous system such as stroke, Alzheimer’s disease, epilepsy, Parkinson’s disease, and multiple sclerosis.  It is estimated that one in six Americans is affected by neurologic disease.

The vision of the AAN is to be indispensable to members and its mission is to promote the highest quality patient-centered neurologic care and enhance member career satisfaction.

AAN members in the United States and Canada enjoy several essential benefits to a successful career in neurology, including access to the highest quality continuing medical education and latest scientific breakthroughs as well as free publications of Neurology®, the world’s leading clinical neurology medical journal, and Neurology Now®, a free magazine for patients with neurologic disease.
 
The AAN Annual Meeting brings together more than 10,000 neuroscience professionals for one of the world's largest neurology gatherings, where more than 2,000 abstracts of scientific research are presented. It has long been a leading showcase for the latest developments in scientific research, and the place to honor peers at the forefront of the work.

The AAN, which was established in 1948, is committed to bringing its members the highest quality continuing medical education and professional education opportunities. The Academy’s Education programs cover the spectrum of neurologic disorders, from the most prevalent to newly emerging issues. The AAN also provides a wide range of program formats, including in-depth print, convenient online and hands-on workshop options.

In addition, the American Academy of Neurology Foundation raises money to support vital research into the prevention, treatment, and cure of neurologic disorders.  Since 1993, it has funded the equivalent of more than 184 years of clinical research.

For more information about the American Academy of Neurology, visit www.aan.com or www.thebrainmatters.org, a new website for patients with neurologic disorders and their caregivers.

New Report Helps Neurologists, Staff with Office Technologies

The AAN has published a report on technology solutions for neurology practices. “Technology Solutions for Neurology Practices: A 2009 Report” presents an overview of the technologies and benefits, shows how to incorporate them into your daily workflow, and provides cost information. The technologies include e-prescribing, smartphones, and chart scanning. The report is available at www.aan.com/techreport.


TheBrainMatters.org Informs Patients, Caregivers on Neurologic Disorders

TheBrainMatters.org, the AAN Foundation’s redesigned patient and caregiver website, now features in-depth, easily searchable information on a host of disease states from NINDS, including such supporting materials as AAN patient guideline summaries, patient stories from Neurology Now®, and AAN Press Books, and a video on Parkinson’s disease. Users can get tips on how to prepare for an office visit, contact information for voluntary health agencies, and information on the importance of research and how to support the future of neurology.

Visitors to the site are encouraged to participate in the Buy a Brain fundraising campaign at www.TheBrainMatters.org/buyabrain. For each $5 brain purchase, you will receive a “virtual brain” icon that will appear on the site, displaying your name and the name of someone you choose to honor. One hundred percent of the proceeds go to support research into neurologic disorders.

2009 AAN Annual Meeting Programming

You can still take advantage of 2009 Annual Meeting Programming from the comfort of your home, office—or anywhere! The 2009 Virtual Annual Meeting products include:

  • Webcast-On-Demand and on DVD
  • 2009 Syllabi on CD
  • Audio MP3s-On-Demand and on DVD
  • Practice CD

Order today at www.aan.com/vam!


Important Dates and Events

2009 Fall Conference in Las Vegas Turns Spotlight on Neurology

Neurology is the star at the Planet Hollywood Resort and Casino in Las Vegas from November 6 through 8, 2009, as the AAN Fall Conference presents the latest updates in neurology and practice management. The weekend provides a convenient way to earn up to 19.5 AMA PRA Category 1 credits™ to help fulfill CME requirements as a necessary step towards maintenance of certification. Benefit from the intimate atmosphere of a smaller conference size and opportunity for one-on-one networking with some of the top experts. Early registration is open at www.aan.com/fall. Register by October 5, 2009, to save on registration and hotel costs.

Audio Conferences Take Confusion Out of Coding

The AAN’s 2009 Practice Management Audio Conferences review proper coding in common circumstances, helping participants to code with greater precision. Each audio conference is one hour and offers one AMA PRA Category 1 Credits™. Topics and presenters include:

  • August 18: Avoid Coding Pitfalls and Reduce Claim Denials / Mary McDermott, MBA, CPC
  • October 13: ICD-9-CM Diagnosis Coding for Neurologists and an Introduction to ICD-10-CM / Laura B. Powers, MD, FAAN
  • November 17: E/M: Minimize Mistakes, Maximize Reimbursement / Peter D. Donofrio, MD, FAAN

For more information, visit www.aan.com/codingcme.

Apply for the 8th Annual Donald M. Palatucci Advocacy Leadership Forum

Application now open for the Donald M. Palatucci Advocacy Leadership Forum taking place January 7–10, 2010 in Ft. Lauderdale, FL. You don’t need a background in advocacy to apply - the Forum provides fantastic training for everyone, regardless of their experience. Graduates leave the program with an in-depth appreciation of the legislative process and how to correspond with the media. “Neurologists develop new skills, insights, and communication strategies that will make them more successful in both their professional and personal lives,” says Brad Klein, MD, MBA. Make a positive change for neurology and apply online by September 20, 2009, visit www.aan.com/palf.

Apply Online for Clinical Research Training Fellowships

Beginning July 31, researchers can use a new online application to apply for 2010 Clinical Research Training Fellowships. Completed applications are due October 1, 2009. Visit www.aan.com/fellowship to learn more about the application process and the six types of fellowship opportunities:

  • AAN Foundation Clinical Research Training Fellowship
  • AAN Foundation Clinical Research Training Fellowship in Headache
  • AAN Foundation Clinical Research Training Fellowship in Stroke
  • AAN Foundation/MGFA Clinician-Scientist Development Three-year Award (cosponsored by the Myasthenia Gravis Foundation of America and the American Academy of Neurology Foundation)
  • AAN Foundation Practice Research Training Fellowship
  • NMSS-AAN Foundation Multiple Sclerosis Clinician Scientist Development Award (cosponsored by the National Multiple Sclerosis Society and the American Academy of Neurology Foundation)

 

Highlighted Member - The Myelin Project


 

Let us introduce you to The Myelin Project. The Myelin Project exists to end human suffering from demyelinating diseases. The Myelin Project aims to accelerate research on myelin repair. Myelin can be destroyed by hereditary neurodegenerative disorders such as the leukodystrophies, and by acquired diseases such as multiple sclerosis. All together, demyelinating diseases affect more than two million people worldwide. What is Myelin? A vital fatty membrane called myelin insulates every nerve of the brain and spinal cord. Like the plastic sheath around an electrical wire, myelin assures the proper conduction of nerve impulses from one part of the body to another. When this sheath is damaged, the results can be devastating. This exact disease was the basis for the popular 1992 movie, Lorenzo’s Oil. Lorenzo's Oil is a therapy to treat these diseases.  Each year, thousands of children and young adults fall prey to this disorder. For the past twenty years, The Myelin Project has been devoting efforts to restore lost myelin and newborn screening. The Myelin Project is wholly committed to putting itself out of business as quickly as possible. This would happen as soon as remyelination treatments become standard in medical practice. The Myelin Project relies on three major strategies: prompting researchers to work as a team and coordinating their research efforts, promoting interaction between researchers and laypeople, and rapid financing of practically oriented experiments. For more information on this compelling and critical cause, please visit www.myelin.org.

Treating the Other Face of X-ALD

It is a great pleasure to announce the launch of the Augusto Odone New Investigator Award, a project co-funded by The Myelin Project and Oliver’s Army. Young scientists embarking on their research career are invited to submit their plans for a project aimed at finding treatments for adrenomyeloneuropathy (AMN).  This debilitating disorder and X-linked adrenoleukodystrophy (X-ALD) are caused by a mutation in the same gene (known as the ALD gene). While X-ALD has been the focus of much research, very little is known about AMN.  This new award is intended to help bridge the gap. 

Most of the visitors to this website know something about X-ALD.  This genetic disease affects about one-third of boys who carry the X-ALD gene, causing loss of most normal neurologic functions within one or two years.  Fewer than 20 years ago, X-ALD was invariably fatal. Thanks, in part, to The Myelin Project, substantial progress has been made in treating X-ALD. The day is near when the final work on a newborn screening test will be complete.  The test will enable doctors to identify all boys who carry the X-ALD gene. Treating pre-symptomatic boys with Lorenzo’s Oil therapy significantly reduces the chances that X-ALD will develop.  For those boys who develop symptoms despite Lorenzo’s Oil therapy, there remains the option of a bone marrow or cord blood transplant.  While still risky, the success rates of bone marrow transplantation have improved significantly in recent years. 

Many visitors to this website have not even heard of AMN.  This disorder affects the other two-thirds of the males and about one-half of the females who carry the X-ALD gene.  AMN is part of the complex of diseases caused by mutations in the ALD gene. In an affected family in which two boys have the same mutation, one may develop ALD and die early, while the other may remain asymptomatic until his 20’s when he develops AMN. X-ALD and AMN have quite different symptoms.  AMN is characterized by loss of spinal cord and peripheral nerve function resulting in stiffness, ataxia, weakness to paralysis and sometimes cognitive defects showing that in some men with AMN, the brain is also involved.

In men, symptoms of AMN most often develop between 20 and 30 years of age, when they are just beginning to build a career and start a family.  Women become symptomatic later in life, in their 40’s or 50’s, and while the symptoms are usually less severe than men with AMN, they can be serious and debilitating. 

 

The American Brain Coalition Welcomes Its New Associate Members


 

American Academy of Addiction Psychiatry

AAAP is a professional membership organization founded in 1985 with approximately 1,000 members around the world. Membership consists of psychiatrists working with addiction, faculty at various academic institutions, medical students, residents and fellows, and related health professionals making a contribution to the field.

AAAP provides the opportunity for members to share ideas, affect public policy while increasing their skills in treating addictions.  The organization also provides networking opportunities and a community of leading experts in the addiction field.  Please visit www.aaap.org for more information.


 

American Society of Addiction Medicine

The American Society of Addiction Medicine mission is to increase access to and improve the quality of addiction treatment; to educate physicians (including medical and osteopathic students), other health care providers and the public; to support research and prevention; to promote the appropriate role of the physician in the care of patients with addiction; and to establish addiction medicine as a specialty recognized by professional organizations, governments, physicians, purchasers and consumer of health care services, and the general public.  For more information, please visit www.asam.org. 

Childhood Brain Tumor Foundation

The Childhood Brain Tumor Foundation (CBTF) is an all-volunteer, nonprofit 501(c) (3) organization and was founded in 1994 by families, friends and physicians of children with brain tumors. The CBTF mission is to raise funds for scientific and clinical research and heighten public awareness of this most devastating disease and to improve prognosis and quality of life for those that are affected. CBTF serves the needs of families nationally and internationally by offering informational materials and resources; an Ombudsmen Program to help families advocate in regard to insurance, employment and educational issues; a hotline; website; and other helpful contacts.

Intracranial Hypertension Research Foundation

The Intracranial Hypertension Research Foundation (IHRF) is a 501(c)3 non-profit organization that promotes and funds medical research of chronic idiopathic and secondary intracranial hypertension (IH). IHRF also provides educational and support services for patients, their families and medical professionals. Research projects include the Intracranial Hypertension Registry, the first patient registry for chronic IH (run jointly with Oregon Health & Science University); the Neuro-Imaging Library; a tissue donation program (run jointly with National Disease Research Interchange); animal model development; and clinical trials with NASA of non-invasive pressure monitoring technology. Please visit www.ihrfoundation.org for more information.

NARSAD- National Alliance for Research on Schizophrenia and DepressionNARSAD

As the world’s leading charity dedicated to mental health research, NARSAD strives to alleviate suffering from mental illness by raising private funds to increase research on the causes, treatments and prevention of such conditions as depression, bipolar disorder, schizophrenia, anxiety disorders and childhood mental disorders – all with the goal of finding better treatments and cures.

Since 1987, NARSAD has distributed more than $250 million in research grants to nearly 2,900 scientists based at leading universities, medical centers and research institutes worldwide. NARSAD’s grant program is administered by its Scientific Council, a volunteer group consisting of 110 prominent experts in the fields of psychiatry and neuroscience who generously offer their guidance in selecting the most promising research proposals for funding support.

NARSAD also serves as a national clearinghouse on some of the latest developments in mental health research, and provides information on the symptoms of and current treatments for a wide range of psychiatric disorders and conditions. NARSAD offers the an information-rich website (www.narsad.org), publishes educational materials and regularly presents free, public forums with experts on mental health research in locations around the country.

Headquartered in Great Neck, N.Y., NARSAD is registered as a 501(c)(3) public charity. It receives no government support, and operates solely through the contributions of individuals, foundations and corporations. NARSAD consistently receives high ratings for its outstanding financial performance and program effectiveness from such charity evaluators as the Better Business Bureau’s Wise Giving Alliance, American Institute of Philanthropy and Charity Navigator.   

 

News and Events from the ABC Membership

World Parkinson Congress 2010 

The World Parkinson Coalition is in the process of designing the program and plans for the 2nd World Parkinson Congress to take place in Glasgow, Scotland from September 28 - October 1, 2010. The WPC 2010 is following on the success of the first WPC in 2006 that attracted nearly 3,200 delegates from 56 countries and will be an international, interdisciplinary forum showcasing the latest developments in the world of Parkinson‘s disease (PD).  Please visit the ABC web site for the WPC 2010 announcement: www.americanbraincoalition.org. 

 National Headache Foundation

The National Headache Foundation recently has launched “Headache U: It’s all about YOU,” a new Web site education tool that matches sufferers with specific resources based on their personal headache patterns.

Each year, approximately 90% of the U.S. population will experience at least one headache and 12% will experience migraine. Although these headaches can often be debilitating, most sufferers do not actively seek relief. Experts say that the first step towards relief is to understand that headaches are very personal. “Headache U” seeks to provide sufferers with a tool that promotes them to understand this idea of the personal nature of headaches. With the launch of “Headache U,” the National Headache Foundation hopes to educate sufferers that headaches are serious and that there are many resources available for relief. “Headache U” also teaches users that each sufferer’s headache is different.

“No one had the same combination of headache pain, frequency, impairment or triggers,” said Dr. Roger Cady, vice president of the National Headache Foundation board of directors. “So the approach to headache care needs to be as personal as the headaches. The sufferer needs to get involved in charting a course to relief based upon an understanding of their own personal headache patterns and getting connected with helpful, sometimes life-changing resources.”

The first tool that “Headache U” offers is “Chart Your Course to Relief: a personal headache care tool.” The tool asks users questions about their headache experiences and provides them with the appropriate resources according to their needs. For example, users who specify that they cannot afford headache care are offered advice on how to have a financial discussion with their healthcare provider and information on alternative options for treatment. Those who indicate they have difficulty discussing their headaches are offered advice to understand and communicate their symptoms and the impact headache is having on their lives.

“People with headaches are all over the map when it comes to their process in seeking relief. But the critical first step is to really get to know their personal headache patterns, and this new tool helps them do that,” Dr. Cady said.

The personal nature of a headache originates from the varying degree of headache experiences. Headaches can range from infrequent and mild tension headaches to chronic and crippling migraines.  Each sufferer experiences a different combination of debilitating symptoms, and each sufferer’s headache is triggered by different physical and environmental factors. As a result, a personal and individualized approach is essential for headache relief.

The National Headache Foundation will continue to provide support and tools for headache relief on this new education portal. “Headache U: It’s all about YOU” can be reached at http://www.headaches.org/headacheu/.

Anxiety Disorders Association of America 30th Annual Conference
 

Anxiety Across the Lifespan:Practical Integration of Basic and Clinical Approaches
March 4-7, 2010
Baltimore Marriott Waterfront
www.adaa.org

Submissions are now open for abstracts and posters. The conference seeks presentations about treatment and research, from basic laboratory to clinical studies, from evidence-based practices to addressing the needs of real-world patients suffering from disorders associated with fear and anxiety. Shape the future of research and treatment of anxiety and anxiety-related disorders. Get more information in the Call for Papers.

The ADAA Annual Conference is the premier professional meeting on the science and treatment of anxiety and anxiety-related disorders in adults and children. More than 700 professionals are expected to attend. Learn more about the conference.

 American Academy of Addiction Psychiatry (AAAP)
 

2009 Annual Meeting and Symposium
December 3-6, 2009
Hyatt Regency Century Plaza
Los Angeles, California
For more information please visit www.aaap.org.
Description: The American Academy of Addiction Psychiatry's (AAAP) 20th Annual Meeting and Symposium will be held at the Hyatt Regency Century Plaza in Los Angeles, California, December 3-6, 2009. The meeting provides physicians and allied health professionals who treat patients with substance use and mental health disorders the latest scientific developments in addiction psychiatry and addiction medicine.  The meeting is structured to encourage interaction between clinicians from multiple disciplines, schools of thought, and settings. Meeting events include symposia, workshops, poster sessions showcasing new research in the field, Breakfast for Trainees, and a case conference with expert discussion.


American Academy of Addiction Psychiatry (AAAP)
 

2009 Review Course
December 5-6, 2009
Hyatt Regency Century Plaza
Los Angeles, California
For more information please visit www.aaap.org.
Description: The AAAP Review Course is an excellent preparation for the ABPN examinations for subspecialty certification and recertification in addiction psychiatry. Past participants have recommended that this course be required for general psychiatry and PGY-V residents, as well as periodically for all academic and treatment personnel to stay updated on the most recent trends in the addiction field.


American Academy of Addiction Psychiatry (AAAP)
 

2009 Buprenorphine and Office-based Treatment of Opioid Dependence
8 Hour CME Course
7:00 am - 5:30 pm, December 2, 2009
Hyatt Regency Century Plaza
Los Angeles, California
For more information please visit www.aaap.org.
Description: The goal of this program is to acquire the knowledge and skills needed to provide optimal care to opioid dependent patients. This program is recommended for physicians with experience and/or interest in treating opioid dependence. It is also recommended for primary care, psychiatric, HIV, pain and addiction medicine physicians.

 National Ataxia Foundation
 

The National Ataxia Foundation’s Annual Membership Meeting provides opportunities for those with both hereditary and sporadic ataxia to meet others who are affected by this movement disorder and hear presentations from world leading ataxia researchers and clinicians.

When: March 12-14, 2010
Where: Chicago Regency O’Hare Hotel, Chicago, Illinois
For more information: 763-553-0020
Information:  http://www.ataxia.org/pdf/2010_AMM_Announcement.pdf

The National Ataxia Foundation (NAF) invites proposals, under a competitive Request for Applications (RFA) process, to award research grants focusing on new and innovative studies that are relevant to the cause, pathogenesis or treatment of ataxia, both hereditary and sporadic. We anticipate funding one-year awards up to $50,000 per year under three different types of award programs.
• Research Grant
 Letter of Intent due - 7/15/09, Application due - 8/15/09
• Young Investigator Award
Letter of Intent due - 8/1/09, Application due – 9/1/09
• Research Fellowship Award
 Letter of Intent due – 8/15/09, Application due – 9/15/09
Guidelines and application: http://www.ataxia.org/research/ataxia-research-grants.aspx

 Benign Essential Blepharospasm Research Foundation


27th International Conference & Scientific Symposium of Benign Essential Blepharospasm Research Foundation
Jointly sponsored by BEBRF and Allergan
August 7 – 9, 2009
Irvine Marriott Hotel, Irvine, CA
On-line Registration at www.blepharospasm.org
Irvine Marriott Hotel reservations at 1-949-553-0100
August 7, Afternoon Session on the Allergan Campus
August 8, All day Scientific & Medical Symposium – Faculty presentations by: Drs. Mark Hallett, Joseph Jankovic, Charles Soparkar, Laurie Ozelius, Alfredo Berardelli(Italy)
                             Craig Evinger, Peter Savino, Alan Scott, Bradley Katz, Cynthia Comella, Giovanni Defazio(Italy), Richard Anderson, Jill Ostrem
August 9, Sunday Morning “Ask the Doctors”, and patients participation

Review the full conference program on the BEBRF website – www.blepharospasm.org.