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Neuropathy Newsbytes

SAVE THE DATE! November 12: "Diabetic Peripheral Neuropathy" Facebook Chat
We are pleased to announce that we will be hosting a Facebook Chat on November 12th that focuses on better understanding the diagnosis, care, and treatment of people dealing with diabetic peripheral neuropathy.

SAVE THE DATE! August 13: "Research = Hope! Hope For New Neuropathy Treatments and Cures!" Facebook Chat
The Neuropathy Association and ResearchMatch will be co-hosting a Facebook Chat on the importance of getting involved in neuropathy research on August 13th. The Neuropathy Association and ResearchMatch announced the launch of the national Neuropathy Research Registry -- aimed at improving and expediting neuropathy research -- during National Neuropathy Awareness Week (May 12-16, 2014). And in just a couple of months, we have over 1,000 volunteers participating in the registry.

SAVE THE DATE! July 16: "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.

June 18: "Breast Cancer Treatment and Neuropathy--A Cost of the Cure" Facebook Chat Draws Several Hundred Participants
On June 18th,The Neuropathy Association and Dr. Susan Love Research Foundation co-hosted a Facebook Chat that put the spotlight on neuropathy as a consequence of breast cancer treatment that drew several hundred particpants.

June 14th Webinar on "What New Neuropathy Research Can We Be Hopeful About?" Offers Hope, Call-To-Action
The Neuropathy Association -- in partnership with Pamlab - a Nestlé Health Science Company -- co-hosted an educational webinar focused on what's new, and what's exciting, in neuropathy research on June 14th that brought together 200 participants. The web-based educational seminar helped patients and their family members better understand neuropathy, implications of new research findings, hear from and ask questions of health care experts in the field, and improve overall quality of life and care.

May 24:"Aches and Gains" Radio Show Puts Spotlight on Nerve Regeneration Research
On May 24th, Dr. Paul Christo -- one of America's leading experts on relieving acute and chronic pain -- put the spotlight on neuropathy and nerve regeneration as he discussed this 'hot topic' research with Dr. Douglas Zochodne in the second of a two-part series on Aches and Gains radio show.

May 23-25: Neuropathy PSA Appears on 2014 Indy 500 Jumbo-trons, Promotes Early Diagnosis
Neuropathy PSA Appears on 2014 Indy 500 Jumbo-trons, Promotes Early Diagnosis

May 21: "Your Chance to Drive Neuropathy Research" Webinar Provides Insight Into Groundbreaking Collaboration
The Neuropathy Association, in collaboration with ResearchMatch, co-hosted an educational webinar focused on the importance of getting involved in neuropathy research on May 21st.

May 20: Boston's Zakim Bridge Shines Purple and Gold for Millions Living with Neuropathy!
On May 20, 2014, Boston-MA's landmark Zakim Bridge lit up purple and gold for millions living with neuropathy. The Leonard P. Zakim Bunker Hill Bridge -- part of The Big Dig Project in Boston -- is one of the widest cable-stayed bridges in the world and serves as the northern entrance to and exit from Boston, Massachusetts. And, on May 20th, this Boston landmark lit up purple and gold to raise the public profile of neuropathy, thanks to the efforts of our local advocates LaVoieHealthScience and Leslie Levine (coordinator for the Association's Weston-MA neuropathy support group).

May 15-16: 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 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.

May 14: World-Famous Niagara Falls Lights Up Purple and Amber for Neuropathy Awareness
On May 14, 2014 (9 pm ET and 10 pm ET), the world-famous Niagara Falls lit up in our signature neuropathy colors -- purple and amber -- to draw attention to the neuropathy epidemic. The special illumination marked National Neuropathy Awareness Week May 12-16 an annual health observance sponsored by The Neuropathy Association. The Niagara Falls Illumination Board joined 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.

May 12: First-Ever National Neuropathy Patient Registry Launched to Accelerate Research for Epidemic Impacting Millions
The Neuropathy Association and ResearchMatch research registry collaboration kicks off Neuropathy Awareness Week, which also includes Niagara Falls and other landmark lightings across the U.S. and Canada.

May 11: PECO Crown Lights -- a Philadelphia Tradition -- Put The Spotlight on Neuropathy
On May 11, 2014, PECO's iconic LEDCrown Lights system put the spotlight on the neuropathy epidemic just as The Neuropathy Association and people across the US -- and around the World geared up for National Neuropathy Awareness Week, May 12-16. PECO estimates that in an evening, 100,000 people will see any one message. The PECO Crown Lights, a Philadelphia tradition, has been displaying messages atop its 23rd and Market Street headquarters since July 4, 1976. Since that time, the company has saluted local community and non-profit organizations with more than 17,500 messages.

Elected Public Officials Issue Neuropathy Awareness Week Proclamations
Since the launch of The Neuropathy Association's campaign in March 2014 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 by elected public officials across the US.

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!

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.

"How to Be Sick" Author Joined Us for a Facebook Chat on March 19th, Bringing Together Several Hundred Participants
On March 19th, health advocate -- and author of the award-winning book "How to Be Sick" -- Toni Bernhard joined us for our Facebook Chat 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.

 

 

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.


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