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2013 Neuropathy Awareness Week In Review!
We kicked off national Neuropathy Awareness Week (May 13-17) with a press release stressing the importance of raising awareness of peripheral neuropathy which impacts over 20,000,000 (or 1 in 15) adults and children in the U.S.--6 million of whom also struggle with neuropathic pain. During the middle of the Week, the Association partnered with the Hereditary Neuropathy Foundation to issue a joint press release highlighting the growing obstacles neuropathy patients face as a result of the reimbursement cuts to primary diagnostic tests--EMGs and NCSs--that went into effect at the beginning of 2013.
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Neuropathy Diagnosis Obstacles Damaging to Patients' Health
Continued lack of peripheral neuropathy awareness combined with Medicare reimbursement cuts for diagnostic tools are causing major impediments to neuropathy epidemic prevention, patient care, and treatments according to The Neuropathy Association and the Hereditary Neuropathy Foundation. The two organizations are using national Neuropathy Awareness Week (May 13-17) to highlight the diagnostic challenges facing patients with all forms of peripheral neuropathy, which have no disease-modifying treatments or cures. Early and appropriate neuropathy diagnosis is key to prevention and providing symptom management to restore quality of life and stem neuropathy's progression.
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Neuropathy in U.S. Skyrocketing: Increase in Diabetic Neuropathy Escalates Neuropathy Epidemic Impacting Millions
According to The Neuropathy Association, there are now 15-18 million Americans with diabetic peripheral neuropathy (DPN) due to the increasing prevalence of diabetes. 60-70% of the 25.8 million adults and children in the U.S. with diabetes have DPN.* The growing DPN statistic significantly raises the overall number of people with neuropathy in the U.S.
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TAKE OUR POLL: We Need Input From Our Members With Chemotherapy-Induced Peripheral Neuropathy!
To follow-up on our recent "Advances in Chemotherapy-Induced Neuropathy Research" Facebook Chat with Dr. Joanna Brell with the National Cancer Institute (NCI), we're launching this poll to help NCI better understand the access to care issues facing people with chemotherapy-induced neuropathy.
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SAVE THE DATE! May 22nd: "Autoimmune Neuropathies" Facebook Chat
We are excited to announce that Drs. Noah Kolb and A. Gordon Smith will be hosting a "chat" event on The Neuropathy Association's Facebook page on May 22nd focusing on autoimmune neuropathies. This Facebook Chat offers the neuropathy community a unique opportunity to learn about--and discuss--autoimmune neuropathies. Drs. Kolb and Smith will field questions posed by the Chat participants while also discussing...
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Association Spokesperson--Actress Turned Nun Mother Dolores Hart--Writes Memoir
The Neuropathy Association congratulates our national spokesperson Mother Dolores Hart on the publication today of her memoir, "The Ear of the Heart: An Actress' Journey from Hollywood to Holy Vows!"
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SAVE THE DATE! On May 2nd, Neuropathy Will Be Featured on SiriusXM Channel 81
May 13-17 is Neuropathy Awareness Week! And, kick-starting our heightened emphasis on awareness-building initiatives all through this month (but, really year-round!) is a radio show on neuropathy on SiriusXM satellite radio. If you're a SiriusXM satellite radio subscriber, be sure to tune in to "Beyond the Heart" radio show on SiriusXM Channel 81 this Thursday, May 2nd, 11am ET. Dr. Jaydeep Bhatt, assistant professor of Neurology at New York University School of Medicine, will be discussing neuropathy with Dr. Nieca Goldberg, host of the "Beyond The Heart" radio show.
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Upcoming Neuropathy Events: Seminars, Webinars, Building Lightings, Facebook Chats, Walk-a-Thons... and more!
It's going to be a busy Spring and Summer, with lots of neuropathy educational offerings coming up at the national and local levels!
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ADVOCACY UPDATE: FDA Announces Disease Areas It Will Be Focusing On
On April 11th, the Food and Drug Administration (FDA) announced via a Federal Register notice a list of 16 diseases areas--several with clear links to neuropathy--it would focus on for the first three years of its five-year Patient-Focused Drug Development Program.
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Dr. Joanna Brell Hosts "Advances in Chemotherapy-Induced Peripheral Neuropathy Research" Facebook Chat on April 17th
On April 17th, Dr. Joanna Brell hosted a "chat" event on The Neuropathy Association's Facebook page, focusing on the advances in chemotherapy-induced peripheral neuropathy research.
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Elected Public Officials Issue Neuropathy Awareness Week Proclamations
Since the launch of The Neuropathy Association's campaign in March 2013 aimed at getting the community to request Neuropathy Awareness Week proclamations from elected public officials and raising neuropathy's profile while also encouraging the media to focus on neuropathy, several proclamations have been issued...
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Webinar on "Dealing with Diabetic Neuropathy on a Day-to-Day Basis" on April 6th, A Success!
The Neuropathy Association, in partnership with Pamlab, LLC, hosted a web-based educational seminar on April 6th, focusing on dealing with diabetic neuropathy on a day-to-day basis. The webinar--featuring Dr. Steven Maynard and Deborah Hinnen, APRN, brought together over 120 participants from across the U.S. and Cananda, as well as overseas (we had participants from Brazil, India, Ireland, and Norway). This educational webinar offered patients and their family members an opportunity to better understand diabetic neuropathy, hear from and ask questions of health care experts in the field, and improve overall quality of life and care.
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Association President and CEO Re-Appointed to Federal Advisory Committee on Pain
The Neuropathy Association is pleased to announce that it's president and CEO Tina M. Tockarshewsky has been reappointed to the Interagency Pain Research Coordinating Committee for the National Institutes of Health (NIH).
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Dr. Bridget Carey Hosts "Dealing With Balance Issues and Neuropathy" Facebook Chat!
On March 20th, Dr. Bridget Carey hosted a "chat" event on The Neuropathy Association's Facebook page aimed at helping patients deal with balance issues and neuropathy. Over 3,000 patients and their family members and friends got together virtually for this Chat to discuss the link between balance issues and neuropathy; strategies for dealing with balance issues; and approaches for preventing falls and minimizing fall-related injuries.
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Neuropathy Association Participates in FDA Workshop on Advancing Neuropathy Clinical Research Trials
The Neuropathy Association recently participated in the first-ever scientific workshop hosted by the Food and Drug Administration (FDA) and the Center for Drug Evaluation and Research (CDER) in Silver Spring, Maryland last month. The goal of the workshop was to jump-start neuropathy research by targeting mechanisms causing the disease, not just therapies to treat symptoms--and, then, to accelerate those projects through the research and development pipeline to reach patients.
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ADVOCACY ACTION ALERT--Prevent Cuts to Critical Neuropathy Federal Research Funding!
With only eight therapies receiving approval from the FDA--all within the past decade--for only four of more than a hundred forms of neuropathy, our neuropathy community desperately needs new and more effective therapies and cures. And with the across-the-board automatic budget cuts (also known as sequestration cuts)--particularly the 8.2% cuts in the budgets of the National Institutes of Health (NIH), the Food and Drug
Administration (FDA), and other health-related agencies--as part of
the Budget Control Act of 2011, now scheduled to take effect on March 1st, we are at risk of losing momentum on much-needed neuropathy treatments and cures. That is why we are urging you to write to your elected representatives about the devastating impact of these sequestration cuts to neuropathy research.
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"Idiopathic Neuropathy" Gets Spotlight on Social Media's Leading Physician Voice, KevinMD.com!
We are excited to share with you the just published guest blog post titled, "Idiopathic Neuropathy Diagnosis: Two Steps Providers Can Take," on social media's leading physician voice--KevinMD.com. This guest blog post--written by Shanna K. Patterson, MD, a member of The Neuropathy Association's Medical Advisory Committee--offers insight into helping people with neuropathy, as well as the health care professionals trying to help them, to get beyond the "idiopathic" neuropathy diagnosis.
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"Paintracking" Book Author, Dr. Deborah Barrett, Hosts Facebook Chat!
On February 20th, "Paintracking" book author Deborah Barrett, PhD, MSW, LCSW hosted a "chat" event on The Neuropathy Association's Facebook page aimed at helping patients overcome some of the challenges of living with chronic neuropathic pain.
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ADVOCACY UPDATE! Access to Critical Diagnostic Tests Threatened
On January 1, 2013, the drastic cuts to nerve conduction (NCSs) and electromyography (EMGs) studies proposed by the Center for Medicare and Medicaid Services (CMS) late last year went into effect despite the efforts of The Neuropathy Association, the medical professional societies representing neurology and neuromuscular specialists, major U.S. medical centers, and other neurological patient groups to address and mitigate these cuts. The Association joined a coalition of patient and provider groups to voice concern about the cuts and submitted a letter from the US House objecting to the cuts that was signed by more than 40 members of Congress as well as a similar bipartisan letter from the U.S. Senate.
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ADVOCACY ACTION ALERT! Ask Congress to Sign Letter on EMG/Nerve Conduction Study Cuts
A clear and present danger for our community is upon us NOW: take immediate action before December 14th! We need your participation in this top priority advocacy campaign to assure that you and all neuropathy patients--as well as patients with other neuromuscular diseases--have continued and timely access to proper diagnosis and care.
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Dr. Marc Treihaft Hosts "Small Fiber Painful Neuropathy" Facebook Chat
On December 5th, Marc M. Treihaft, MD, FAAN hosted a "chat" event on The Neuropathy Association's Facebook page focusing on "Small Fiber Painful Neuropathy." This Facebook Chat helped hundreds of patients and their family members better understand small fiber neuropathy better, hear from and ask questions of a health care expert in the field as well as peers--patients and caregivers--who are battling this painful condition, and improve overall quality of life and care. In addition, it offered insight into the neuropathy epidemic and the uphill battle for both patients and the physicians trying to help them. It also stressed that living well with neuropathy is possible with early diagnosis, symptom management, and regular follow-ups, but it requires active engagement by the patient in his/her own medical care along with the aid of an array of resources--limited as they are--that do currently exist.
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Shanna K. Patterson, MD Joins The Neuropathy Association's Medical Advisory Committee
The Neuropathy Association is pleased to have Dr. Shanna K. Patterson join its Medical Advisory Committee. Dr. Shanna Patterson is assistant director of Electromyography and a board-certified attending neurologist at St. Luke's Roosevelt Hospital Center in New York City. She also holds an appointment at Columbia University as assistant clinical professor of Neurology. She completed her residency training in Neurology and a fellowship in Clinical Neurophysiology, with an emphasis on EMG and neuromuscular disorders, at Columbia University. She has authored academic papers and a book chapter on topics related to neuromuscular disorders, including neuropathy. In her clinical practice she conducts initial evaluations for patients with neuropathy symptoms and also sees patients for more in-depth assessments of previously diagnosed idiopathic neuropathy.
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Most Read Neuropathy Articles in 2012
Neuropathy is a 24/7/365 battle for over 20,000,000 Americans. Comprehending just how multi-faceted this chronic neurological disease is--not to mention getting to a diagnosis; finding treatments that work; seeking support from family, friends, and others with neuropathy; coping with the emotional, physical, and financial toll of this disease; and finding trusted resources--is a journey in of itself.For nearly twenty years, The Neuropathy Association has been with many of you on this journey, providing support and education, facilitating awareness of peripheral neuropathy, advocating for your interests and needs, and--most importantly--promoting research into the causes of and cures for neuropathies. The Association has also published a wealth of articles with the help of contributing writers--expert health care professionals and patient advocates in the field--aimed at helping you better understand your neuropathy and work more closely with your health care provider to improve your life with neuropathy.
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Dr. Christina Ulane Hosts "Getting A Neuropathy Diagnosis" Facebook Chat
On November 13th, Christina M. Ulane, MD, PhD hosted a "chat" event on The Neuropathy Association's Facebook page focusing on "getting a neuropathy diagnosis." The first step towards effectively managing peripheral neuropathy is to correctly diagnose neuropathy and, when possible, find the underlying cause. Therapy is directed at treating the underlying disease/cause and at providing symptom relief. This Facebook chat aims to help patients and their family members understand neuropathy better, hear from and ask questions of a health care expert in the field as well as peers--patients and caregivers--who are battling neuropathy, and improve overall quality of life and care. It offers insight into the process of getting a neuropathy diagnosis, and the uphill battle for both patients and the physicians trying to help them.
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ADVOCACY ACTION ALERT! Your Chance to Tell FDA to Give Neuropathy More Attention
The Food and Drug Administration (FDA) just held a public meeting and announced an opportunity for public comment related to FDA's patient-focused drug development initiative. This initiative is being conducted to fulfill FDA performance commitments made as part of the fifth authorization of the Prescription Drug User Fee Act (PDUFA V). This effort provides for a more systematic approach under PDUFA V for obtaining patient perspective on the disease severity and the currently available treatments for a set of disease areas. Our neuropathy community has a unique and exciting opportunity to go on record and to directly tell the FDA what you need and how important it is that they select peripheral neuropathy for their list of 20. Comment period closes November 1st.
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"Painful Feet: A Peripheral Neuropathy Symposium" On November 3rd In Denver, Colorado
On November 3rd, the Colorado Neurological Institute (CNI) and the Denver Chapter of The Neuropathy Association hosted its biannual neuropathy symposium. Titled, "Painful Feet: A Peripheral Neuropathy Symposium," the symposium offered patients, caregivers, and health care professionals a forum to hear about updates in the neuropathy field from health care experts and advocates.
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Dr. Todd Levine Hosts "Understanding the Link Between Pre-Diabetes, Diabetes, and Diabetic Neuropathy" Facebook Chat
On October 24th, Dr. Todd D. Levine hosted a "chat" event on The Neuropathy Association's Facebook page focusing on "understanding the link between pre-diabetes, diabetes, and diabetic neuropathy." Diabetic peripheral neuropathy (or diabetic neuropathy) is the leading cause of neuropathy in the U.S. It is also one of the most common complications of diabetes. According to the American Diabetes Association, 60 to 70 percent of people with diabetes will develop diabetic neuropathy. It has now also been scientifically shown that pre-diabetes--affecting 57 million Americans--may be a risk factor for neuropathy. This Facebook chat aims to help patients and their family members understand diabetic neuropathy better, hear from and ask questions of a health care expert in the field as well as peers--patients and caregivers--who are battling diabetic neuropathy, and improve overall quality of life and care. It offers insight into the diabetic neuropathy epidemic and the uphill battle for both patients and the physicians trying to help them. It also stresses that living well with diabetic neuropathy is possible with early diagnosis, symptom management, and regular follow-ups; but it requires active engagement by the patient in his/her own medical care along with the aid of an array of resources--limited as they are--that do currently exist.
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Austin, TX Support Groups Host Second Annual "Neuropathy Awareness and Benefit Concert"on October 21st!
Our Austin, TX support groups--led by Nancy Herlin and Marjory Haddix--hosted their second annual "Neuropathy Awareness and Benefit Concert" on October 21st at the Nutty Brown Café in Austin. Featuring live music by local bands, including Audioroad and opener Joe Dowdle (a contestant on Survivor: Tocantins), a silent auction, and good food--all at the Nutty Brown Café's huge patio under the boughs of ancient oaks and hill country stars--this event provided an evening of fun and camaraderie for more than 100 family members and friends who attended!
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ADVOCACY ACTION ALERT! VA Proposes Amendment to Expand Agent Orange Consideration: Public Comments Accepted Through Oct. 9th
The Department of Veterans Affairs (VA) is proposing to amend its adjudication regulation concerning presumptive service connection for acute and sub-acute peripheral neuropathy associated with exposure to certain herbicide agents. This proposed amendment is necessary to implement a decision by the Secretary of Veterans Affairs to clarify and expand the terminology regarding presumption of service connection for peripheral neuropathy associated with exposure to certain herbicide agents.
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Drew Yeannakis Hosts "Understanding Social Security Disability" Facebook Chat
On September 26th, Drew Yeannakis hosted a "chat" event on The Neuropathy Association's Facebook page focusing on "navigating social security disability." For many patients in the neuropathy community, neuropathy and neuropathic pain can be disabling, impacting quality of life and productivity. Depending on the severity of disability, Social Security Disability Income provides cash benefits to replace some of the income that a person living with neuropathy might no longer earn due to disability. This Facebook chat offered insights into process of applying for social security disability income, the Social Security Administration's role in determining if you are disabled, tips for navigating the system...and much more!
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Social Media's Leading Physician Voice, KevinMD.com, Brings Attention to Cancer-Related Neuropathies
Social media's leading physician voice, KevinMD.com, recently published a guest blog post, "Helping Cancer Survivors Fight Neuropathy." This guest blog post--written by Cindy Tofthagen, PhD, ARNP, a member of The Neuropathy Association's Neuropathic Pain Management Medical Advisory Council--offers insight into neuropathy as an underappreciated health issue impacting cancer survivors.
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Cindy Tofthagen, PhD, ARNP Hosts "Chemotherapy-Induced Neuropathy" Facebook Chat
On August 22nd, Cindy Tofthagen, PhD, ARNP--a member of The Neuropathy Association's Neuropathic Pain Management Medical Advisory Council--hosted a "chat" event on The Neuropathy Association's Facebook page focusing on chemotherapy-induced neuropathy. Many patients in the neuropathy community are cancer survivors. For them, neuropathy and neuropathic pain is the "price of survival" that severely compromises quality of life and daily function. This Facebook chat event aims to offer insight into the neuropathy epidemic and the uphill battle for both patients and the physicians trying to help them.
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Advocacy Spotlight: Improving Access to the Shingles Vaccine in New York State!
On July 18th, Governor Andrew Cuomo signed A.6301-D/S.3808-B--legislation aimed at expanding New York's pharmacist immunizer law--enabling certified pharmacists to administer the shingles and pneumococcal vaccines (a convenience previously available only for flu shots). In an effort to ensure expanded access to preventive care, particularly for those at risk for shingles which can lead to post-herpetic neuralgia. The Neuropathy Association has partnered with the New York State Association of County Health Officials, the Chain Pharmacy Association of New York State, and the Pharmacists Society of the State of New York to support this crucial legislation with letters of support to Governor Cuomo and other New York state legislators.
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Dr. Shanna Patterson Hosts "Idiopathic Neuropathy" Facebook Chat
On July 18, 2012, Dr. Shanna K. Patterson hosted a "chat" event on The Neuropathy Association's Facebook page to increase the public profile of--and the much-needed conversation about--idiopathic neuropathy. Many patients in the neuropathy community have been given a diagnosis of "idiopathic neuropathy" or neuropathy from an unknown cause. Some may have treatable causes identified when seen by a physician who specializes in evaluating patients with neuropathy. However, even after thorough evaluation, approximately 20% of people with neuropathy and 50% of people with small fiber neuropathy have no identified underlying cause.
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New Neuropathy Support Groups Launched in Georgia, Illinois, Pennsylvania, and Washington!
The Neuropathy Association is excited to announce the addition of the following neuropathy support groups in Georgia, Illinois, Pennsylvania, and Washington. Providing support for people with neuropathy and their family members is a critical facet of our mission to bring help, hope, and healing to the neuropathy community.
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Advocating for A.1832: Restricting Health Insurers From Limiting Access to Pain Medications
On June 7th, we came closer to eliminating barriers to care and appropriate treatments for our neuropathy community in New Jersey. By the majority of votes, New Jersey Assembly Health and Senior Services Committee--chaired by Assemblyman Herb Conway--voted in support of the Assembly Bill 1832 (or A.1832), known as the Step Therapy Bill.
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Dr. Corey Hunter Hosts Facebook Chat on "What You Need to Know to Beat Neuropathic Pain"
On June 27th, Dr. Corey Hunter--a member of The Neuropathy Association's Neuropathic Pain Management Medical Advisory Council--hosted a "chat" event on The Neuropathy Association's Facebook page to increase the public profile of--and the much-needed conversation about--neuropathic pain. The Facebook chat offered insights into the neuropathic pain epidemic and the uphill battle for both patients and the physicians trying to help them. It also stressed that living well with neuropathy and neuropathic pain is possible, but it requires active engagement by the patient in his/her own medical care along with the aid of an array of resources--limited as they are--that do currently exist.
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Advocating for Expanded Access to Biomedical Research Results
In an on-going effort to advocate for improved access to care and treatments as well as new treatments and cures for the neuropathy community, The Neuropathy Association recently issued an advocacy alert to its constituents, encouraging them to weigh in with the White House about the importance of transparency in federally funded biomedical research. As you may know, the National Institutes of Health (NIH) has a Public Access Policy that requires all NIH-funded research results to be available on the Internet no later than twelve months after publication. This makes critical research information available to populations directly affected, including the neuropathy community.
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"Fierce Joy" Author, Ellen Schecter, Shares Her Neuropathy Experience With Our Neuropathy Community Via Facebook
On June 6th, "Fierce Joy" author Ellen Schecter joined The Neuropathy Association to host its debut Facebook chat event aimed at increasing the public profile of--and much-needed conversation around--neuropathy. An award-winning children's book and television writer in her past life, Ellen chronicles her diagnosis with CIDP (an autoimmune form of neuropathy), how she found a way to be sick without suffering, and how she transformed the loss of her place in the world of work into a quest for her soul in "Fierce Joy."
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National Poll Shows Delayed Diagnosis, Inadequate Pain Care, And Distressing Life Changes Plague Millions With Neuropathy
A new national Neuropathy Association poll of peripheral neuropathy patients finds that the majority of respondents experience an extended period of time from symptom onset to diagnosis of their neurological disease, with 57% taking two or more years to receive an accurate diagnosis. In addition to facing delays in receiving a diagnosis that might help prevent disease progression and provide early access to appropriate care and treatment, close to 50% of these patients have been told their neuropathy is "idiopathic" (of an unknown cause). A large majority--70%--of patients experience chronic neuropathic (nerve) pain for which they use multiple therapies, and nearly half say they are challenged in coping with neuropathy's impact on their overall well-being and quality of life.
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"Post-Shingles Nerve Pain" Webinar on June 2nd
The Neuropathy Association, in cooperation with NeurogesX, is excited to share with you news about a June 2nd web-based educational seminar we are offering on post-shingles nerve pain (or post herpetic neuralgia).This webinar--featuring the Association's Neuropathic Pain Management Medical Advisory Council member Dr. Christopher Gharibo (NYU School of Medicine)--aims to help patients and their family members understand post herpetic neuralgia better, hear from and ask questions of a health care expert in the field, and improve overall quality of life and care.
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Look Who's Talking About Neuropathy In Anticipation of Neuropathy Awareness Week
In anticipation of Neuropathy Awareness Week, May 14-18, 2012, we are seeing increasing talk about neuropathy in a variety of media outlets...thanks to our community stakeholders who are helping us with our awareness-building campaign. This translates to greater public awareness and more understanding for neuropathy. Most importantly, it means the public is learning about this debilitating disease, recognizing the symptoms, and reaching out to doctors and the Association for help.
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Neuropathy PSA Featured in Buildings Across the U.S.
Starting today, a special public service announcement (PSA) for The Neuropathy Association is airing nationwide for two weeks--May 7-21, 2012--on Captivate Closed Circuit TV Network as part of our on-going neuropathy awareness and educational campaign.
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Highlights of The Neuropathy Association's Neuropathy Summit-Physicians Conference Published as a Supplement to JPNS
The Neuropathy Association proudly announces that highlights of its groundbreaking Neuropathy Summit-Physicians Conference have just been published as a special supplement to the Journal of the Peripheral Nervous System (JPNS) This supplement showcases the presentations made at the Physicians Conference and provides summaries of the cutting-edge research and best practices for researchers and clinicians which were discussed at the meeting.
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"Aches And Gains" Radio Show Host Discusses CIDP With Dr. David Cornblath and Ellen Schecter: Listen to the Podcast!
Dr. Paul Christo--one of America's leading experts on relieving acute and chronic pain--recently discussed the "Mystery of Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)" with Dr. David R. Cornblath and Ellen Schecter on his radio show on pain, "Aches and Gains," on May 5, 8:00 p.m. ET on WBAL Radio, 1090 AM.
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Social Media's Leading Physician Voice, KevinMD.com, Brings Much-Needed Attention to Growing Neuropathic Pain Epidemic
Social media's leading physician voice, KevinMD.com, recently published a guest blog post, "Thinking Differently About Treating Neuropathic Pain." This guest blog post--written by the Neuropathy Association's Neuropathic Pain Management Medical Advisory Council member Corey W. Hunter, MD--offers insights into the "neuropathic pain epidemic and the uphill battle for both patients and the physicians trying to help them."
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Association Launches Survey to Help People With Neuropathy Tell Their Story--To Everyone!
The Neuropathy Association has launched an on-line survey aimed at helping the public better understand and address the growing neuropathy and neuropathic pain epidemic. The brief two-minute survey is important as we work towards our annual national health observance, Neuropathy Awareness Week, this year during May 14-18. The survey results will help us talk during this week to the broad scope of neuropathy from the patients' perspective--the varying forms, the range of symptoms, the treatment options, issues with access to appropriate care and treatments, and its impact on quality of life and care.
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Corey W. Hunter, MD and Cindy Tofthagen, PhD, ARNP Join The Neuropathy Association's Neuropathic Pain Council
We are pleased to have Drs. Corey Hunter (New York Pain Management Group) and Cindy Tofthagen (University of South Florida) join our Neuropathic Pain Management Medical Advisory Council to address your number one issue: neuropathic pain. The Neuropathy Association launched its Neuropathic Pain Management Medical Advisory Council--under leadership of the co-chairs, Dr. Sudhir Diwan (The Spine and Pain Institute of New York) and Dr. Mark Lema (Roswell Park Cancer Institute)--in 2009 to help develop specialized neuropathic pain-focused programs to better address the needs of the neuropathy community.
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Advocating for Increased NIH Funding and Neuropathy Research
On March 20, 2012, Representatives Edward Markey (MA-7) and Brian Bilbray (CA-50) submitted to the House Appropriations Committee and the Labor-HHS Subcommittee members, a letter supporting a funding level of at least $32 billion for NIH in Fiscal Year 2013.
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"Diabetic Neuropathy" Webinar On May 12, 2012
The Neuropathy Association is excited to announce the launch of the first in a series of educational webinars aimed at helping patients and their family members better understand diabetic neuropathy, hear from and ask questions of health care experts in the field, and improve overall quality of life and care.
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Teenager Uses CIDP Diagnosis to Raise Awareness With "Run or Walk With Mike 5K" on May 20th
My entire life changed in September 2010...or so I thought. Overall, I was feeling healthy and fine, but my family and friends noticed that I was limping when I walked. I was having trouble opening a bottle top and buttoning my jeans. After seeing various doctors, I was diagnosed with chronic inflammatory demyelinating polyneuropathy. To manage this disease, I began receiving intravenous infusions of immunoglobulin for five days, every two weeks. I was a 16 year-old teenager who all of a sudden had to worry about a disease that I didn't fully understand.
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"Aches And Gains" Host Discusses Diabetic Neuropathy With Dr. Alan Berger and Jerry Mathers: Listen to Podcast...
Dr. Paul Christo--one of America's leading experts on relieving acute and chronic pain--recently discussed diabetic neuropathy with Dr. Alan Berger (from the University of Florida and Shands Jacksonville) and "Leave It To Beaver" star Jerry Mathers on his radio show on pain, Aches and Gains, on WBAL Radio, 1090 AM.
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Association President and CEO to Serve on NIH Research Committee
The Neuropathy Association is pleased to announce that it's president and CEO Tina M. Tockarshewsky is serving on the Interagency Pain Research Coordinating Committee for the National Institutes of Health (NIH).
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Neuropathy DVD Project Launched to Increase Knowledge, Raise Funds for Research
Coping with Chronic Neuropathy DVD Project Launched to Increase Knowledge, Raise Funds for Research
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New Neuropathy Support Groups Launched in Florida, Michigan, and North Carolina
The Neuropathy Association is excited to announce the addition of the following neuropathy support groups in Florida, Michigan, and North Carolina. Providing support for people with neuropathy and their family members is a critical facet of our mission to bring help, hope, and healing to the neuropathy community.
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National Neuropathy Spokesperson Mother Dolores Hart Attends Academy Awards on February 26th!
Congratulations to our national spokesperson Rev. Mother Dolores Hart: an upcoming HBO documentary film profiling her spiritual career transition called "God is the Bigger Elvis" has received an Oscar nomination! Be sure to look for Mother Dolores Hart on the red carpet at the Academy Awards on Sunday, February 26th.
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Signing On To The MODDERN Cures Act To Advance The Discovery And Development Of New Treatments And Tests for Neuropathy
In an ongoing effort to advocate for new treatments and cures for the neuropathy community, The Neuropathy Association supports the Modernizing our Drug and Diagnostic Evaluation and Regulatory Networks (MODDERN) Cures Act. Crafted by the National Health Council, the MODDERN Cures Act (H.R. 3497) was introduced by Congressmen Leonard Lance (R-NJ) and Jay Inslee (D-WA) last November.
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U.S. Senate HELP Committee Hearing On Feb. 14th Examines Ways To Tackle The Chronic Pain Epidemic
On February 14, 2012, the U.S. Senate Health, Education, Labor, & Pensions (HELP) Committee--chaired by Senator Tom Harkin (D-IA)--held its first Congressional hearing, titled "Pain in America: Exploring Challenges to Relief," to review the Institute of Medicine's (IOM) 2011 report on pain detailing the status of pain care management and research in the U.S.
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New Neuropathy Support Groups Launched in CA and FL
The Neuropathy Association is excited to announce the addition of the following neuropathy support groups in California and Florida. Providing support for people with neuropathy and their family members is a critical facet of our mission to bring help, hope, and healing to the neuropathy community.
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Cost-Shifting Strategy Threatens Access to Neuropathy Treatments
Challenging economic conditions have health advocates increasingly concerned about specialty tiering--a cost-shifting strategy being used by insurers to saddle patients with an unfairly large share of drug costs--and its potential to impede access to life-saving treatments.
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