Search
Neuropathy

Make a Donation

 

 


Neuropathy Newsbytes

SAVE THE DATE! July 16th -- "When Neuropathy and Fibromyalgia Overlap" Facebook Chat
The Neuropathy Association and the National Fibromyalgia & Chronic Pain Association are pleased to announce that we will be co-hosting a Facebook Chat on July 16th that focuses on better understanding the diagnosis, care, and treatment of people dealing with overlapping neuropathy and fibromyalgia.

The Neuropathy Association Celebrates Another Social Media Milestone!
It feels like we announced our "10,000th Like" on Facebook just the other day (July 18, 2013, actually!), and now we're celebrating another social media milestone: "15,000 likes"! Just four years ago, we launched our Facebook page to expand the reach of our mission. Our social media efforts complimented our robust monthly publication Neuropathy E-News, e-mail alerts about new resources, advocacy issues, and upcoming events, in-person seminars, support group meetings, and webinar offerings. Our Facebook page connects with 10,040 (and counting!) people so they can hear from us and talk virtually with the entire community--every day and, often, several times a day--about breaking research, clinical trials, educational resources, advocacy issues The Neuropathy Association is are tackling...and much more! Facebook is changing how we raise neuropathy awareness--for the better!

SAVE THE DATE! May 18: Join the Rothmans for "THE 3RD ANNUAL MIKE MILE" in Stamford, CT
On May 18th, 19-year old Michael Rothman--diagnosed in 2010 with chronic inflammatory demyelinating polyneuropathy (or CIDP--an autoimmune form of neuropathy)--and his family will host their third annual MIKE MILE at High Ridge Park in Stamford, Connecticut.

SAVE THE DATE! May 15-16 -- Tampa Landmark to Light Up for Neuropathy Awareness
The SunTrust Financial Centre Tower, located in the heart of Tampa's downtown business district -- lights up the city every night, giving its residents and visitors a chance to marvel at the pyramid-shaped light display at the top of this 36-story building and to ask, "I wonder what the lights stand for today." On May 15 - 16, it will light up -- for a second consecutive year -- in purple and gold to recognize the struggles of over 20,000,000 Americans living with neuropathy.

SAVE THE DATE! May 14: Niagara Falls to Light Up Purple and Amber for Neuropathy Awareness
On May 14, 2014 (9 pm ET and 10 pm ET), the iconic Niagara Falls will light up in our signature neuropathy colors -- purple and amber -- to draw attention to the neuropathy epidemic. The special illumination will mark National Neuropathy Awareness Week May 12-16 an annual health observance sponsored by The Neuropathy Association. The Niagara Falls Illumination Board joins millions across the US and Canada and millions more around the world in observing the Week, and bringing much needed attention to this debilitating neurological disease.

SAVE THE DATE! May 4: Advocate Mike Smith Runs Pittsburgh Half Marathon To Raise Profile of Neuropathy
PA-based neuropathy advocate Michael Smith has been preparing for the upcoming Pittsburgh Half Marathon on May 4th for a while. Mike has been running 5Ks and other races with his wife Gabrielle and friends frequently. Last year, he ran the Pittsburgh Half Marathon to help raise awareness and much-needed funds for the Animal Rescue League Shelter & Wildlife Center, a local animal shelter where he rescued his cat from in 2010.

SAVE THE DATE! April 7-20: Neuropathy Association PSA to be Featured in Office Buildings Across the U.S.
A special public service announcement (PSA) for The Neuropathy Association will be airing nationwide for two weeks--April 7 - 20--on Captivate Closed Circuit TV Network as part of our on-going national neuropathy awareness and educational campaign. This PSA can be viewed on digital screens in office building tower elevators across the U.S. It informs viewers about neuropathy's symptoms, the importance of getting an early diagnosis, and the resources for help.

TAKE ACTION! Get A Proclamation For National Neuropathy Awareness Week
With National Neuropathy Awareness Week -- May 12 - 16 -- only a couple of months away, working towards getting a proclamation for neuropathy with the help of your elected public officials is a great way to raise neuropathy's public profile in your community. It is also a great opportunity to encourage the media to focus on this disabling neurological disease affecting over 20,000,000 people across the U.S. We submitted our own request for a proclamation for Neuropathy Awareness Week to NYC Mayor Bill de Blasio's office earlier this week and we hope you will consider doing the same in your respective city!

TAKE ACTION! Help Us Create Our 2014 Neuropathy Word Cloud
We're doing it again -- we're creating another Neuropathy Word Cloud, and we'd like your help! Share your -- or a loved one's -- neuropathy diagnosis with us and we will update this "2014 Neuropathy Word Cloud" to kick off a national (and global!) conversation about neuropathy.

SAVE THE DATE! March 19th for our Facebook Chat with "How to Be Sick" Author Toni Bernhard
We are excited to share that health advocate -- and author of the award-winning book "How to Be Sick" -- Toni Bernhard will be joining us for our upcoming Facebook Chat on March 19th focusing on facing the ups and downs of chronic illness and pain.

Our "Staying Active with Neuropathy" Facebook Chat Draws Several Hundred Participants
On February 12th, we hosted a "Staying Active With Neuropathy" Facebook Chat that drew several hundred participants for a lively discussion. For many years, health care providers used to tell people with arthritis to "rest their joints." But today we know different--we know about the importance of physical and occupational therapy in managing arthritis. Similarly, many of you have been told that you can't exercise or shouldn't be exercising with neuropathy. A growing body of research is showing that physical activity can reduce pain and improve function, mobility, mood, and quality of life for people living with neuropathy and neuropathic pain. Physical activity can also help people with neuropathy better manage co-existing chronic conditions they might have such as diabetes, heart disease, and obesity.

Neuropathy Seminar in NYC's Times Square -- Feb. 12th
On Feb. 12th, The Neuropathy Association and Walgreens collaborated to offer a free Neuropathy Seminar in NYC's Times Square. The discussions from the seminar were then taken online -- The Neuropathy Association's Facebook page -- via the Association's monthly Facebook Chat.

Our 2013 Milestones--YOU Make Them Possible!
Without YOU, The Neuropathy Association could not have made 2013 a milestone-filled year for all of us in the neuropathy community. And, with 2014 just around the corner, we wanted to take a moment to reflect on all that we have accomplished together this year

Most Read Neuropathy Articles in 2013!
Neuropathy is a 24/7/365 battle for many in our community. From 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...to finding trusted resources, The Neuropathy Association has been with many of you on this journey. We have also developed a wealth of articles and resources 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. And, to help you manage your neuropathy, here are a few of our most read neuropathy articles in 2013...:

"Shingles Nerve Pain" Facebook Chat on Dec. 3rd Offers Resources, Help...
Several hundred people joined The Neuropathy Association for an informative Facebook Chat on December 3rd to better understanding the diagnosis, care, and treatment of people with shingles nerve pain (also known as post-herpetic neuralgia or PHN).

"Understanding and Living Well with Small Fiber Neuropathy" Webinar, A Success!
The Neuropathy Association, in partnership with Transgenomic, Inc., hosted a web-based educational seminar on November 16th that brought together over 300 people to better understand and cope with the day-to-day challenges of living with small fiber neuropathy (SFN).

Neuropathy Association and Dysautonomia International Co-Host Facebook Chat
Nearly 1,000 people joined The Neuropathy Association and Dysautonomia International for an informative Facebook Chat on October 29th to discuss and get a better understanding for the diagnosis, care, and treatment of people with dysautonomia. In addition, upwards of 4,000 have already read the conversation threads from the Chat and joined in the conversations over the days that followed, sharing their own experiences with one another. Our guest hosts -- Dr. Svetlana Blitshteyn (University at Buffalo School of Medicine and Biomedical Sciences); Dr. Laurence Kinsella (Saint Louis University Medical School); Dr. Paola Sandroni (Mayo Clinic); and Lauren Stiles, Esq. (Dysautonomia International) -- fielded questions posed by the Chat participants on a wide range of topics, offering answers, insights, and resources.

"That Cancer Show" Puts the Spotlight on Neuropathy
On October 27th, Cindy Tofthagen, ARNP, PhD (a member of The Neuropathy Association's Neuropathic Pain Management Medical Advisory Council) put the spotlight on cancer-related neuropathies on "That Cancer Show." Hosted by Mary Lawrence (president and CEO of the Cornucopia Cancer Support Center) and Dave Richmond (on-air host with WPTF 880 AM), That Cancer Show is a weekly talk radio program that airs on WPTF 680 AM / WSJS 600 AM, and it also live streams on www.wptf.com). The show recently featured a two-part program about the impact of cancer treatment on the five senses, including a discussion on neuropathy that aired earlier this month.

"Understanding IVIG Treatments for Autoimmune Neuropathies" Facebook Chat on Sept. 25th Offers Resources, Help
Several hundred people joined The Neuropathy Association for an informative Facebook Chat on September 25th to discuss the use of IVIG treatments for autoimmune neuropathies as well as how these therapies are administered and made accessible to people who are prescribed IVIG as a neuropathy treatment option. In addition, upwards of 3,500 people read the conversation threads from the Chat and joined in the conversations over the days that followed, sharing their own experiences. Our guest hosts -- Jennifer Arms, Vice President of Reimbursement (BioRx); Lisa M. Betts, Pharm.D., National Program Director of Immune Globulin (Walgreens Specialty Infusion Pharmacy); Peg Gruenemeier, RN, CRNI, CHC, Director of Clinical Services (BioRx); Susan L. Kondik, RN, CRNI, Branch Quality Improvement Coordinator (Coram Specialty Infusion Services); and John Louis, Director of Marketing and Channel Development (BioRx) -- fielded questions posed by the Chat participants on a wide range of topics, offering answers, insights, and resources.

"There's More to Neuropathy than Numbness, Weakness, Tingling, and Pain" Facebook Chat on August 28th Draws Hundreds
On August 28th, Drs. Jaydeep Bhatt, Myrna Cardiel, and William Schwieterman hosted a "chat" event on The Neuropathy Association's Facebook page aimed at helping us better understand how neuropathy affects us--from head to toe. This educational, and awareness-building, Chat event drew several hundred participants on Facebook for a much-needed global conversation on neuropathy.

NYSE Closing Bell Raises Neuropathy Awareness
New York, August 12, 2013, -- The Neuropathy Association leadership and staff -- accompanied by a handful of patients, their loved ones, health care providers, and volunteers -- visited the New York Stock Exchange today to ring The Closing Bell. The Closing Bell ceremony -- signaling the end of the day's trading -- is viewed by over 100 million people worldwide. Today, the ceremony brought much-needed awareness to the neuropathy epidemic. It also puts the spotlight on the on-going efforts of The Neuropathy Association, our patients and their loved ones, the caregivers, health care providers, and researchers who are working together towards a better future for the entire neuropathy community.

Dr. Alan Berger and Jerry Mathers Discusses Diabetic Neuropathy on "Aches and Gains"
On August 10th (8:00 am EST), Dr. Paul Christo -- one of America's leading experts on relieving acute and chronic pain -- put the spotlight on diabetic neuropathy with guest hosts Dr. Alan Berger and Jerry Mathers on his radio show on pain, Aches and Gains, on SiriusXM satellite radio, channel 131.

Neuropathy Association Celebrates Social Media Milestone!
Wow, we did it! Last night, together, we reached a new milestone: we've got "10,000 likes" on our Facebook page! Just three years ago, we launched our Facebook page to expand the reach of our mission. Our social media efforts complimented our robust monthly publication Neuropathy E-News, e-mail alerts about new resources, advocacy issues, and upcoming events, in-person seminars, support group meetings, and webinar offerings. Our Facebook page connects with 10,040 (and counting!) people so they can hear from us and talk virtually with the entire community--every day and, often, several times a day--about breaking research, clinical trials, educational resources, advocacy issues The Neuropathy Association is are tackling...and much more! Facebook is changing how we raise neuropathy awareness--for the better!

What's A Neuropathy Word Cloud?
Over the past few weeks, we have been asking our members to share how they described neuropathy -- in two words or less -- to help family members and friends better understand their struggle with neuropathy. The responses were overwhelming: we received over 300+ descriptors ... most of which were used to update our Neuropathy Word Cloud--the goal being to create a powerful visual representation of what it means to have neuropathy. Why? Simply put--to get the neuropathy epidemic on the public's radar.

Neuropathy Association and Hereditary Neuropathy Foundation Co-Host "Hereditary Neuropathies" Facebook Chat
The Neuropathy Association and the Hereditary Neuropathy Foundation are pleased to announce that we will be co-hosting a Facebook Chat on July 24th that focuses on better understanding the diagnosis, care, and treatment of hereditary neuropathies.

Hundreds Gathered for the "THE MIKE MILE" in Stamford, Connecticut
On June 23rd, 18-year old Michael Rothman--diagnosed in 2010 with chronic inflammatory demyelinating polyneuropathy (or CIDP--and autoimmune form of neuropathy)--and his family hosted the "MIKE MILE" at High Ridge Park in Stamford, Connecticut.

Dr. Corey Hunter Hosts "Neuropathic Pain IS Different--Getting Family and Friends To Understand!" Facebook Chat
On June 12th, Dr. Corey Hunter hosted a "chat" event on the Neuropathy Association's Facebook page focusing on helping our loved ones understand that neuropathic pain is different.

Bravelets Partners With The Neuropathy Association To Help Fight Neuropathy!
To help observe Neuropathy Awareness Week (May 13 - 17), BraveletsTM--a company that is "more than just a bracelet company"--recently partnered with The Neuropathy Association to help fight neuropathy by offering a special 20% discount on its neuropathy-themed bracelets during the month of May.

Neuropathy on SiriusXM -- Channel 81 on May 29th
Many of you may have tuned in to SiriusXM's "Beyond the Heart" radio show on Channel 81 earlier this month to hear Dr. Jaydeep Bhatt discuss neuropathy. The radio show was so well-received that SiriusXM will be doing it again on May 29th. If you're a SiriusXM satellite radio subscriber, be sure to tune in to the "Oncology" radio show on SiriusXM Channel 81 this Wednesday, May 29th, 12 Noon ET. This time, Dr. Bhatt will be discussing chemotherapy-induced peripheral neuropathy with the show's hosts Drs. Abe Chachoua and Silvia Formenti.

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.

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.

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.

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.

Drs. Noah Kolb and Gordon Smith Host "Autoimmune Neuropathies" Facebook Chat on May 22nd
On May 22nd, Drs. Noah Kolb and A. Gordon Smith hosted a "chat" event on The Neuropathy Association's Facebook page focusing on autoimmune neuropathies. This Facebook Chat offered the neuropathy community a unique opportunity to learn about--and discuss--autoimmune neuropathies.

Tampa Landmark Puts The Spotlight On The Neuropathy Epidemic!
The SunTrust Financial Centre Tower, located in the heart of Tampa's downtown business district--lights up the city every night, giving its residents and visitors a chance to marvel at the pyramid-shaped light display at the top of this 36-story building and to ask, "I wonder what the lights stand for today." On May 5 -6, it lit up purple and gold to recognize the struggles of over 20,000,000 Americans living with neuropathy.

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!"

Neuropathy Featured on SiriusXM Channel 81 on May 2nd
May 13-17 was Neuropathy Awareness Week! And, kick-starting our heightened emphasis on awareness-building initiatives all through this month (but, really year-round!) was a radio show on neuropathy on SiriusXM satellite radio. Thousands of SiriusXM satellite radio subscribers had a unique opportunity to tune in to "Beyond the Heart" radio show on SiriusXM Channel 81 on May 2nd, 11am ET to hear Dr. Jaydeep Bhatt (assistant professor of Neurology at New York University School of Medicine) discuss neuropathy with the radio show's host Dr. Nieca Goldberg.

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!

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.

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.

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...

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.

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).

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.

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.

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.

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.

"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.

"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.

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.

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.

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.

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.

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.

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.

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.

"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.

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.

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!

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.

 

 

Members of Congress and patient advocacy groups including The Neuropathy Association recently announced the introduction of new legislation, meant to remedy inadequate Medicare reimbursements currently restricting patient access to IVIG.

Advocacy Alert: Help Restore Access to IVIG Now!

 

IVIG: A Life-Sustaining Treatment for Many

 

Betsy Gotbaum, public advocate for the city of New York, was joined by patients and Association supporters to proclaim National Neuropathy Week 2009 in New York City during a breakfast event at O’Neals’ Lincoln Center restaurant on May 14.

NYC Neuropathy Week Proclamation Breakfast Event
 

Good Health: The Power of Volunteering

Mims Cushing, author of You Can Cope With Neuropathy: 365 Tips For Living A Full Life, recently spoke to New York City support group members to share her new book and to advocate for the importance of volunteering.


Home / Contact UsPeripheral Neuropathy Site Map / Disclaimer & Private Policy
© 2014 The Neuropathy Association / 60 E. 42nd Street, Suite 942 / New York, NY 10165 / 212-692-0662



 

     
- +