Neuropathy Association

"The Neuropathy Association
www.neuropathy.org
The Neuropathy Association® is a public, charitable, nonprofit organization that was established in 1995 by people with neuropathy and their families or friends to help those who suffer from disorders that affect the peripheral nerves. We are fast approaching a membership of 100,000, and we have more than 250 support groups throughout the United Stated serving patients."

Desert Neuropathy Support Group

I am sorry for not posting more often. I have recently been busy starting more blogs including my support group blog and web site. The web address is www.DesertNeuropathysupportgroup.org and our blog site is www.Desertneuropathysupportgroup.blogspot.com

For now I hope you find out more about me and the others. More resources is www.foundationforpn.org www.neuropathy.org My personal 24/7 phone number is (760) 288-6467 and my email is david-hines@hotmail.com. www.neuropathyaction.org

I look forward to meeting you or hearing from you.

Thank you,
David Hines
Neuropathy Patient, support group leader and advocate.

Find me on facebook at www.facebook.com/Hope.in.Motion4Neuropathy and twitter at www.twitter.com/cimfree

My political blog is at www.Onthepoliticalside.blogspot.com

Medical Groups Suck!

I am pulling my hair out with the Desert Oasis Health care outfit. They are the ones who control or try and control our health care. I am at my wits end. I have been on IVIg since Dec of "07 and I told these guys that and I'm due for my next
infusion this Saturday but it is not going to happen because these idiots have
told me I have to go to THERE RHEUMATOLOGIST! What does a rheumatologist
got to do with neurological disorders? Would some one please tell me?

I don't know what else to say? Please can some one tell me what the heck is going on? Am I missing something?

Advocacy groups push for passage of Medicare Patient IVIg Access Act of 2009

Get Involved!

Anyone can be an advocate—it is easy and important. IVIG is so important to so many people, but most members of Congress do not realize how many people rely on IVIG for their health. You can change that. You can tell them how much IVIG means to your health or to your loved one’s health.

A bill has been introduced in the House of Representatives and also in the Senate to help solve the problems many Medicare beneficiaries have getting IVIG where it is best for them: the physician’s office, the home or the hospital outpatient infusion center. These bills will not become law unless Congress hears from people like you all across the country. (Note: Congress often writes laws like this for Medicare beneficiaries because the federal government pays for Medicare. However, private insurance companies often follow Medicare policy, so these bills, if passed, can help the entire IVIG community.)

It takes just a few minutes to take action. First, click on the link below to find the three members of Congress who serve you: your one representative in the House and your two Senators. Then, after reviewing the material about the bills written to solve the problems for Medicare patients on IVIG, send an email to your members of Congress.

Thank you for your efforts!

BENEFITING FROM SUPPORT GROUPS

A support group is a valuable asset in learning about your peripheral neuropathy (PN). We have well over 100 established groups across the U.S. that provide you with monthly meetings where you can meet and speak with others with PN, hear medical professionals discuss various aspects of PN, find knowledgeable doctors in the area, and ask questions that you might be unable to ask of people who do not have PN. The support group gives you an opportunity to participate on committees that help the group function. The support group is an excellent opportunity for the person who becomes the group’s leader to inform group members of the best way to get a good diagnosis by suggesting people write their medical history.

If there is no support group in your area you might think of becoming a support group leader. We are very supportive of new support group leaders, and we provide a full packet of information on setting up the group. Many groups have neurologists who will speak to the group and help the group find a local hospital which will offer a room for the meeting. Once a group has established a location in a local hospital, there are other hospital personnel who you might find to speak to the group, such as pain specialists, physical therapists and occupational therapists.
Groups usually meet for two hours once a month. Part of the time is used for support group business, part for a speaker with a Q & A session, and then the remainder for breaking into small groups to discuss problems of interest to the members. For example, a subgroup to discuss pain, a subgroup with motor problems, or a subgroup of people who want more information.

The Neuropathy Association’s Support Group Coordinator is Paul Guidos. For more information on starting or running a support group, Paul can be reached at 212-692-0664 or at supportgroups@neuropathy.org.

For general support group information, contact the Association at 212-692-0662.
And, as always, be sure to visit The Neuropathy Association’s website, www.neuropathy.org.

MANAGING YOUR OWN Neuropathy TREATMENT


Part I: BECOMING YOUR OWN BEST NEUROPATHY ADVOCATE
Since neuropathy is often a difficult disease to diagnose, it is wise to become an informed patient, gathering up as much information as possible and becoming knowledgeable about your symptoms. There are approximately 100 different types of peripheral neuropathy, and unfortunately not every neurologist is familiar with the disease, treatments and services available. Prepare yourself by reading, learning the vocabulary, accurately describing your symptoms and providing a full medical history to the neurologist. Other health providers who deal with aspects of neuropathy include pain specialists, physical and occupational therapist and podiatrists. Taking a proactive approach to your illness will help you engage more effectively with them in their efforts to treat your specific neuropathy.

Becoming Informed

Join The Neuropathy Association at 1-880-247-6968, http://www.neuropathy.org/. You can get information on neurologists and support groups in your area.
Read The Neuropathy Association’s booklets Explaining Peripheral Neuropathy, Exercising with Neuropathy, and A Guide to the Peripheral Neuropathies.
Read Numb Toes and Aching Soles and Numb Toes and Other Woes both by John Senneff and available from the Association or your public library.
Check the Internet for articles: go to a search engine (like http://www.google.com/), and type “neuropathy” in the search box
Do Your Homework as a Patient
Prepare your medical history, recording all illnesses, accidents and surgeries since childhood. Make a list of current medications and dosages to share with physician.
Bring along prior EMGs (Electromyogram), NCVs (Nerve Conduction Velocity), skin or nerve biopsies, blood tests, and any other tests from a previous neurologist.
Write down the important questions you want to ask the doctor. Bring along a family member or friend to listen to the doctor, and to record answers to your questions. They can also help you make sure you covered everything on that list.
Always get copies of previous evaluations or summaries, and tests you have taken so you will have a complete medical history if you change doctors.
When medications are prescribed, check on the Internet for drug interactions and drug side effects by again using a search engine like http://www.google.com/ to look up your medications. Also consult with your pharmacist and read through any inserts provided with your medications.
If you are not satisfied, you can get another opinion from a different neurologist.
Ask your physician or the Association about clinical trials where new medications are tested.
Join, or start a support group where you can exchange information with others.
Remember, you are not alone in this! There are plenty of resources out there to help you, and they will ultimately better serve you if you help yourself!

ABOUT peripheral NEUROPATHY: FACTS

Peripheral neuropathy is a disorder of the peripheral nerves—the motor, sensory and autonomic nerves that connect the spinal cord to muscles, skin and internal organs. It usually affects the hands and feet, causing weakness, numbness, tingling and pain. Peripheral neuropathy’s course is variable; it can come and go, slowly progressing over many years, or it can become severe and debilitating. However, if diagnosed early, peripheral neuropathy can often be controlled.
Why Have We Heard So Little About Peripheral Neuropathy? Is It A New Disease?
Peripheral neuropathy is common. It is estimated that upwards of 20 million Americans suffer from this illness. It can occur at any age, but is more common among older adults. A l999 survey found that 8-9% of Medicare recipients have peripheral neuropathy as their primary or secondary diagnosis. The annual cost to Medicare exceeds $3.5 billion.
Peripheral neuropathy has always been present, but has not received much attention. Its extent and importance have not yet been adequately recognized. It is apt to be misdiagnosed, or thought to be merely a side effect of another disease like diabetes or cancer or kidney failure. The development of new therapies has unfortunately been slow and under funded.
What Causes Peripheral Neuropathy?
There are many causes of neuropathy. Approximately 30% of neuropathies are “idiopathic,” or of an unknown cause. In another 30% of cases, the cause is diabetes. Other neuropathy causes include autoimmune disorders, tumors, heredity, nutritional imbalances, infections or toxins.
Can Peripheral Neuropathy Be Cured?
Some types of peripheral neuropathy can be cured, however, most cannot. However, many can be helped. Therapy is directed at treating the underlying disease and at improving the symptoms with the right medications. An experienced neurologist can help patients feel more comfortable, and their quality of life can be greatly improved. But it is extremely important to get to an experienced neurologist as soon as you notice the symptoms before the disease has a chance to cause too much permanent damage

Peripheral Neuropathy Awareness & Attention

ABOUT peripheral NEUROPATHY: AWARENESS AND ATTENTION
The National Institutes of Health spent $35 million in 2004 and $29 million in 2005 on peripheral neuropathy research. NIH funding for neuropathy research lags far behind its investment in other neurological disorders. For other disorders with a similar range of disability (multiple sclerosis and epilepsy), the NIH expenditure per patient ratio is approximately 200 times greater than it is for neuropathy.
Too often, patients are told there is nothing that can be done for them, they will just have to live with it. Some patients are even told it is all in their heads, that they are imagining it. People who are suffering with the disorder often feel they have nowhere to turn. They feel isolated and alone. Even their families do not understand what they are going through and start to doubt them. The Neuropathy Association is working hard to change these perceptions through its awareness-building and outreach activities.
Public awareness of this illness is unfortunately low. A 1999 awareness survey reported that only 7% of all adults in the U.S. know about neuropathy. And, yet, it is estimated that up to 20 million Americans, whether they know it or not, currently have some type of neuropathy.

New poll confirms Neuropathy hits millions in there prime

First-Time National Poll Confirms Neuropathy Hits Millions In Their PrimeData shows 82% of patients have neuropathy onset during their 30s-60s
New York, May 13, 2009—A new national Neuropathy Association poll of peripheral neuropathy patients finds that the majority of respondents had their neurological disease begin during their prime adult years, with 82% experiencing neuropathy’s onset between the ages of 30-69. “Peripheral neuropathy does not discriminate: it affects all ages, all types of people,” observes Tina Tockarshewsky, president and CEO of The Neuropathy Association. “However, our survey shows neuropathy strikes most patients in the prime of their lives, when they are building their families, careers, and futures.”“With the potential for millions of active adults to suffer from progressive chronic pain and possible disability, we are leaving the U.S. unprepared to face a major public health crisis if healthcare providers, the media and public policy officials continue to ignore the inadequacy of medical resources and research funding for neuropathy. Neuropathy is taking an immeasurable toll on Americans’ quality of life and generating extreme social and medical cost burdens,” adds Tockarshewsky.For nearly 15 years, The Neuropathy Association has been an active national patient advocacy organization working to change misconceptions about this progressive, chronic neurological disease. May 11-15 marks the fifth annual National Neuropathy Week, an event launched by The Neuropathy Association to raise awareness about neuropathy and its warning signs. Peripheral neuropathy, or “nerve damage,” impacts over 20 million Americans, making it one of the most common chronic diseases in the U.S. Neuropathy results from injury to the peripheral nerves, disrupting the body’s ability to communicate with its muscles, organs and tissues. Most Americans do not recognize neuropathy’s symptoms, which include weakness, numbness, tingling and pain, especially in the hands and feet. If experiencing these symptoms, patients need to consult with a neurologist. With early diagnosis, neuropathy can often be controlled and some types can be cured. If ignored, symptoms can intensify to loss of sensation, unremitting pain, or disability. Too often neuropathy is discovered only after causing irreversible nerve damage.The Neuropathy Association’s national survey of 1,300 patients asked about the age when their neuropathy began, revealing:- 3 percent had their illness start in their 20s;- 27 percent had their illness start in their 30s-40s;- 55 percent had their illness start in their 50s-60s; and- 15 percent had their illness start in their 70s-80s.This survey was complemented by a second national survey which asked 1,000 patients to identify their specific type of neuropathy. While there are over 100 known types of peripheral neuropathy, 52% of the patients responded their neuropathy was “idiopathic,” meaning of no known cause. Other types noted were:- 15 percent had diabetic neuropathy;- 12 percent had an autoimmune-related neuropathy;- 6 percent had a hereditary neuropathy;- 4 percent had a chemotherapy-related neuropathy;- 4 percent had a trauma-induced neuropathy; and- 7 percent had a neuropathy related to other sources such as toxin-induced, nutritional deficiencies, gastro-intestinal disorders, metabolic diseases, or infectious diseases such as HIV or Lyme.“Neuropathy is often misrepresented as only being diabetes-related. However, this survey demonstrates that for every diabetic neuropathy patient, there are at least six more patients suffering with various neuropathies, including some for which there is no known cause and, consequently, no known treatment. Right now, we see great hope in our research community: we are on the verge of real progress in many areas. However, neither funding nor public attention is being directed towards getting these researchers across the finish line,” notes Dr. Thomas H. Brannagan, III, medical advisor for The Neuropathy Association.“The neuropathy patient community has only three FDA-approved treatments for three types of neuropathy, faces increasing Medicare reimbursement restrictions, and receives inadequate levels of federal research funding. With millions suffering, this is an unacceptable public health state of affairs,” Tockarshewsky emphasizes. “Supporting neuropathy research would bring better treatment options and cures to millions of neuropathy patients. Doing so would also help a range of other patients, including those with multiple sclerosis, muscular dystrophy and cancer. Americans must demand cures for neuropathy.”About The Neuropathy AssociationThe Neuropathy Association is the leading national nonprofit organization providing neuropathy patient support and education, advocating for patient’s interests, and promoting research into the causes of and cures for peripheral neuropathies. The Association currently has twelve neuropathy medical Centers of Excellence at major university hospitals across the country in order to serve patients with neuropathy, provide treatment and conduct research, including: - Banner Good Samaritan Medical Center (Phoenix, AZ)- University of California at San Francisco - Good Samaritan Hospital (Los Angeles, CA)- University of Miami Miller School of Medicine (Miami, FL)- University of Florida and Shands Jacksonville - University of Michigan (Ann Arbor, MI)- Saint Louis University (St. Louis, MO)- Columbia University Medical Center (New York, NY)- Weill Cornell Medical College of Cornell University (New York, NY)- Ohio State University (Columbus, OH)- University of Kansas (Kansas City, KS)- University of Utah (Salt Lake City, UT)The organization works to connect patients with one another through its active network of members, regional chapters, medical Centers of Excellence and 135 patient support groups. For more information, please visit www.neuropathy.org.


This interest All interests Search:
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Health & Home Video regarding H.R. 2002 Medicare Patient IVIg Access Act of 2009 Another video will be shot next month at the 3rd Annual NAF June 25th

Neuropathy Action Foundation Awareness Day!

The neuropathy action foundation is having there 3rd annual awareness day on June 25.

You can get all the info at: www.neuropathyaction.org

It is being held in Sacramento and folks are coming from all parts of the country!

Everyone is welcome!

I HOPE to seeing you there!

Best regards,

David Hines

IVIg a week ago

IVIg on Saturday May 23rd 2009 with nurse Allean!

STAMP OUT NEUROPATHY !

Join Us! Let's help each other!
At this very moment, there are millions of Americans suffering from the effects of peripheral neuropathy. It may be you, a loved one, a friend or a neighbor. We are all affected by neuropathy.
Now is the time to finally give a strong united voice for the neuropathy community. Now is the time to demand that neuropathy be recognized and known across the country. Now is the time to demand action to ensure better diagnosis and treatment. In our own lives, we all can help.
The Neuropathy Association, the leading national non-profit organization representing the neuropathy community, will be launching the Stamp Out Neuropathy Campaign this April and we need your support. We want to raise an additional $150,000 during April and May to help the Association expand its educational outreach and scientific research efforts.
It’s EASY to Help:
If you haven’t already done so, we ask that you join us and become a member through the Stamp Out Neuropathy Campaign:
Make your contribution to the Stamp Out Neuropathy Campaign
Recruit others to support our efforts to help the neuropathy community. It is a chance for you to tell them how important the cause is to defeat this disease:
Email your friends and loved ones to help Stamp Out Neuropathy
Thousands of those affected by neuropathy across the country including The Neuropathy Association’s staff team and volunteer board of directors will be writing to their friends, family, and colleagues to ask them to join the Stamp Out Neuropathy Campaign.
Your participation is vital! With more support, especially during these tough economic times, we will be able to fund more neuropathy-specific scientific research that could one day lead to a cure and halt the progression of the disease.
To learn more, contact Doug Olson at The Neuropathy Association at dolson@neuropathy.org,60 East 42nd Street, New York, NY 10165 or (212) 692-9442.

HR 2002 The Medicare patient IVIg access act of 2009

WASHINGTON, April 22 Members of Congress and patient advocacy groups including The Neuropathy Association announced today the introduction of new legislation - H.R. 2002, Medicare Patient IVIG Access Act of 2009 - meant to remedy inadequate Medicare reimbursements that currently restrict patient access to Intravenous Immune Globulin (IVIG), a life-saving and life-enhancing therapy for many primary immunodeficiency diseases; chronic lymphocytic leukemia; Kawasaki disease; idiopathic thrombocytopenic purpura; autoimmune and neurological conditions such as chronic inflammatory demyelinating polyneuropathy (CIDP), Guillain-Barre syndrome, myasthenia gravis, myositis, and multiple sclerosis, just to name a few.
Sponsored by Reps. Israel, Brady and Schwartz, this bill is similar to legislation introduced by Sens. Kerry and Alexander in March of this year. Passage of this legislation would benefit Americans nationwide for whom IVIG is a necessary therapy to help them live with their primary immunodeficiency disease, neurological, autoimmune or other rare chronic conditions and illnesses.
"For those suffering with immune-deficiency disorders, IVIG is a life-saving and life-sustaining treatment. But because of inadequate Medicare coverage, patients are suffering," said Rep. Steve Israel. "We must fix the insufficient coverage Medicare provides for IVIG treatment, which is why I'm sponsoring legislation to help get these patients the care they need."
"Access for those who rely on IVIG therapy to sustain a normal life is an issue that must be addressed, and we are doing so by introducing this bill," said Rep. Kevin Brady. "Through my work with patients and families living with conditions that rely on IVIG, the access issue has become very close to me personally and a cookie-cutter approach like Medicare can be dangerous to this unique treatment."
The Neuropathy Association along with eighteen patient advocacy groups and health care professional organizations, including the Immune Deficiency Foundation and the Alliance for Plasma Therapies, already have endorsed the bill via a joint letter of support, and IVIG patients and caretakers echoed that support while sharing their personal struggles in trying to access IVIG therapy during a briefing for stakeholders today. Special guests and patient advocates included Lt. Col. Eugene B. Richardson, ret., a Neuropathy Association support group leader and chronic inflammatory demyelinating polyneuropathy (CIDP) patient; Terri Cerda, who, together with her two young daughters, battles combined immunodeficiency disease and whose family will be featured on the May 10 episode of ABC's "Extreme Makeover: Home Edition," and Nebraska State Senator Abbie Cornett, who has common variable immunodeficiency disease. Other speakers included Jenny Gardner, a patient with common variable immunodeficiency and Craig Orfield, staff of Senator Enzi who has idiopathic thrombocytopenic purpura.
“No patient should ever have to fear for their lives or their livelihoods because, suddenly, a life-sustaining treatment is taken away from them,” said Tina Tockarshewsky, president and CEO of The Neuropathy Association. “To have this legislation unanimously endorsed by so many disease groups means the patient community believes we finally have within our grasp a true fix to end of years of suffering. We thank Representatives Israel, Brady and Schwartz for their leadership in addressing this problem, and we urge Congress to resolve this access emergency before even more patients are denied access to their treatments.”
"Since 2005, patient access to IVIG has diminished, and Medicare beneficiaries throughout the country have experienced major health problems because of reimbursement reductions," said Marcia Boyle, founder and president of the Immune Deficiency Foundation. "We are grateful for the support of Representatives Israel, Brady and Schwartz and their sponsorship of this critical legislation that is designed to restore access to this vital therapy, and we are heartened by the overwhelming support from the patient advocacy community."
"Today is an unprecedented day to see so many different disease groups come together as a unified voice to strongly urge Congress to fix the unintended consequence of the Medicare Modernization Act which has caused Medicare beneficiaries to lose access to their lifesaving plasma therapy, IVIG, and has caused detrimental consequences to their health," said Michelle Vogel, executive director of the Alliance for Plasma Therapies. "We applaud Representatives Israel, Brady and Schwartz for championing this issue to restore patient access to this vital therapy in all sites of care."

About the Immune Deficiency Foundation
The Immune Deficiency Foundation is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education, and research. To learn more about IDF, visit http://www.primaryimmune.org/
About the Alliance for Plasma Therapies
The Alliance for Plasma Therapies is a national non-profit organization established to provide a unified, powerful voice of patient organizations, healthcare providers and industry leaders to educate about the diseases that rely on plasma derived therapies and advocate for fair access to plasma therapies for patients who benefit from their lifesaving effects. To learn more about the Alliance, visit http://www.plasmaalliance.org/.
Patient Advocacy Organizations and Professional Societies Supporting the Medicare Patient IVIG Access Act of 2009
Immune Deficiency Foundation, Alliance for Plasma Therapies, American Academy of Asthma, Allergy and Immunology, American Autoimmune Related Diseases Association, American Partnership for Eosinophilic Disorders, A-T Children's Project, Clinical Immunology Society, Foundation for Peripheral Neuropathy, GBS/CIDP Foundation International, Infusion Nurses Society, International Pemphigus and Pemphigoid Foundation, Jeffrey Modell Foundation, The Myositis Association, National Patient Advocate Foundation, The Neuropathy Association, Neuropathy Action Foundation, Patient Services Inc., and Platelet Disorder Support Association.

Giant Axonal Neuropathy

Small Fiber Neuropathy from Free Dictionary.com

Small fiber peripheral neuropathy

Peripheral Neuropathy Support Group News

Welcome to my blog. Yesterday we had our monthly support group meeting and what a wonderful meeting it was. We had around 8 new members join us and I am so grateful for there presence.

The current group I attend is the Palm Springs neuropathy association support group. We meet the second Friday of the month at 1:30 to 3:00 PM. I moved to the Palm Springs area last year, a community in southern California that is visited by snow birds from the north and college students during spring break and others around the world for its mild weather and beautiful landscape and views of the mountains that encase the desert. It is also a year round home to many retired people and celebs. It is a heaven to hundreds of non-profits and philanthropies of all kinds.I have been coming to this area all of my life threrfore I know the area very well. After being diagnosed with a variance of peripheral neuropathy (PN) called CIDP (Chronic Imflammatory Demylenating Polyradiculoneuropathy) over two years ago I new I had to spread the word and awareness regarding this rare disease. I live in a highly populated area of the world and there were only 4 support groups within a 200 square mile area. It is my goal to get started as many support groups as possible in my lifetime inorder that no one can go without answers to there questions and others who are alike with the same disorder.

We meet to educate, support, and lend an ear and/or shoulder to listen to and/or to cry on. We can relate to each other and understand what other's are experiencing. We try to answer other's questions and if we cannot we will find the answer. There are reported to be hundereds of different types of neuropathies. We are all so different but at the same time all so much alike.

I am a member of the neuropathy association (http://www.neuropathy.org/). The GBS/CIDP Foundation International serving patients of GBS, CIDP and Variants with support, education and research. (http://www.gbs-cidp.org/).

The next support group meeting in the Palm Springs area is April 10th, 2009 at 10:00 AM at the Mizell Senior Center in Palm Springs. For more information you can contact me at my email address: david-hines@hotmail.com or you can call me at: (760) 671-5980 anytime.


Once again, Thanks to everyone who attended the meeting and I look forward to learning more about each one of you and hopes of a long friendship.

In closing, I recommend the following books, "Numb Toes and Aching Soles" "Numb Toes and Other Woes" both by John Senneff. "Peripheral Neuropathy When the Numbness, Weakness, and Pain won't stop" by Doctor Norman Latov, M.D., PhD.

In God's Healing Hands,
David Hines
Advocate, Patient and Child of God

Please Read Kristen's blog at CIDPandMe!

CIDPandMe by kristen. Look for blogs I follow. It's good reading about Sally's story.

www.CIDPandMe.blogspot.com

God Bless,
David Hines

Research grants from the Neuropathy Association

Scientific Research Grants Announced for a Better Understanding of Autoimmune and Chemotherapy-Induced Neuropathies

New York, NY (10/31/08) The Neuropathy Association today announced two awardees for its annual Scientific Research Grants Program.

The Neuropathy Association, a nonprofit organization, was established in 1995 by people with neuropathy and their families and friends to help those who suffer from disorders affecting the peripheral nervous system. Now, a national organization--headquartered in New York City--with over 50,000 members and supporters, the Association’s on-going mission is to provide patient support and education, facilitate information exchange, advocate for patients’ interests and, most importantly, encourage and fund critical neuropathy research.

Every year, The Neuropathy Association awards two scientific research grants. Each grant awards $80,000 allocated at $40,000 per year for a two year period. This year’s grant recipients--Gary J. Bennett, Ph.D. of McGill University in Quebec, Canada and Hélène Bour-Jordan, Ph.D. and co-principal investigator, Mark S. Anderson, M.D., Ph.D. of the University of California, San Francisco Diabetes Center--were chosen from eleven research applicants working in the field of neuropathy research at prominent medical institutions across the U.S. and Canada.
Dr. Bennett’s proposal, Mechanism of Paclitaxel-Evoked Peripheral Neuropathy, is based on data suggesting that paclitaxel (Taxol®) causes neuropathy by a novel and previously unrecognized mechanism. It pursues the hypothesis that dysfunction of axonal mitochondria leads to the resulting peripheral neuropathy. Paclitaxel is used by tens of thousands of patients as a first-line drug in the treatment of ovarian, breast and non-small cell lung cancer.
Chemotherapy-induced peripheral neuropathy describes neurotoxic injury to the peripheral nervous system caused by several chemotherapeutic agents belonging to the taxane, vinca alkaloid and platinum-complex classes. Neuropathy is a serious side-effect of paclitaxel; for patients who develop neuropathy resulting from paclitaxel, the neuropathy can be severe—and often painful—thus preventing or limiting the use of paclitaxel as an effective chemotherapeutic agent and leading to a decline in the patient’s quality of life. Understanding the pathophysiology of paclitaxel-induced neuropathy will improve our understanding of other toxin-induced neuropathies, and, possibly, lead to the development of drugs that prevent the nerve degeneration and neuropathy.

According to Dr. Bennett, “Knowing how paclitaxel causes peripheral neuropathy will potentially help us prevent and/or control it. Preventing and controlling the neuropathy resulting from paclitaxel will, in turn, allow us to administer larger doses to more effectively kill cancer cells and save lives. We are optimistic that the research supported by this grant from The Neuropathy Association will help us understand and solve this problem.”

Drs. Jordan and Anderson—co-investigators on the proposal Identification of Neural Autoantigens in Autoimmune Peripheral Neuropathy—hope to investigate the immunopathology of autoimmune peripheral neuropathies. In particular, they propose to identify proteins of the peripheral nervous system (PNS) that are targeted by the immune system in autoimmune neuropathy.

Autoimmune diseases develop when the immune system malfunctions and attacks the body and itself. Chronic inflammatory demyelinating polyneuropathy (CIDP) and Guillain-Barré syndrome (GBS) are autoimmune types of neuropathy. CIDP is an autoimmune disorder of the peripheral nervous system characterized by progressive weakness and impaired sensory function in the arms and legs. It is caused by damage to the myelin sheath (the insulation surrounding the peripheral nerves). Whereas CIDP is chronic, GBS is an acute autoimmune neuropathy with the body’s immune system directly attacking the peripheral nervous system. It is usually triggered by or follows a specific event disrupting the immune system such as an infection, surgery, trauma or vaccination. Identification of PNS autoantigens targeted in CIDP and GBS patients could potentially advance the understanding of pathogenic mechanisms and evaluate disease evolution and response to therapy. The identification of autoantigens could also one day lead to novel therapeutic strategies in GBS and CIDP.

Dr. Jordan explains, “This grant enables us to determine antigens of the peripheral nervous system targeted by autoantibodies and examine immune responses to these autoantigens. Autoantibodies in tissue-specific autoimmune diseases are excellent indicators of disease and are instrumental in identifying major autoantigens that are now used in clinical trials in several autoimmune disorders, including type1diabetes, multiple sclerosis and rheumatoid arthritis.”
Each grantee is awarded $80,000 over a period of two years. After their initial grant of $40,000, the grant award recipients will receive a continuing grant award for an additional $40,000 from the Association upon receipt of a constructive progress report at the end of the first year. The Association’s current continuing grant initiatives include:

Efficacy of Surgical Decompression of Lower Extremity Nerves in Patients with Painful Peripheral NeuropathyVinay Chaudhry, M.D., F.R.C.P.Johns Hopkins University
Activation of Signaling Pathways in Inherited NeuropathiesJames L. Salzer, M.D., Ph.D. New York University

Development of High-Throughput Drug Screening for HIV NeuropathyAhmet Höke, M.D., Ph.D., F.R.C.P.Johns Hopkins University

Sphingolipid Synthesis and NeuropathyRobert H. Brown, Jr., M.D., Ph.D.Massachusetts General Hospital

Ronnie Chalif, the Association’s president affirms, “Finding answers and a cure for neuropathy requires that we build upon our strategic research initiatives. We are rallying in the face of current neuropathy research trends and continue to invest in a cure.” To date, The Neuropathy Association has awarded more than $750,000 in research grants since the launch of its Neuropathy Research Grants Program in 1998.

About Peripheral Neuropathy:

Peripheral neuropathy is one of the most common diseases, affecting upwards of 20 million Americans. It results from injury to the peripheral nerves, disrupting the body's ability to communicate with its muscles, organs and tissues. Early warning signs include weakness, numbness, tingling and pain, especially in the hands and feet. If ignored, the symptoms can range from loss of sensation at one extreme to unremitting pain at the other. However, if neuropathy's symptoms are recognized and diagnosed early, it can often be controlled. One third of all neuropathy patients have diabetes. (Of the entire diabetic population, more than 50 percent will develop some form of diabetic neuropathy.) Approximately 30 percent of neuropathies are "idiopathic," or of an unknown cause. A third of neuropathy cases include a range of causes including autoimmune disorders, tumors, heredity, nutritional imbalances, infections, and toxins. Neuropathy's progression can be variable: it can come on suddenly, or it can progress slowly over the years. Some neuropathies are mild, and others can be debilitating. If diagnosed early, it can often be controlled and some types can be cured. Too often neuropathy is discovered after it has caused irreparable harm. Neuropathy can occur at any age, but is more frequent among older adults.
About UCSF Diabetes Center:

For more than half a century, researchers at UCSF have been at the center of major developments in diabetes treatment and care. From the discovery of genes thought to play an important role in the development of diabetes to the first clinical tests of human insulin that has brought relief to millions, UCSF's history of innovation is recognized across the globe. Today, the Diabetes Center has one singular mission: to bring lasting improvements in quality of life to individuals with type 1 and type 2 diabetes. This common goal unites the clinical, education and research arms of the Diabetes Center into a comprehensive program that is unique among diabetes facilities. http://www.diabetes.ucsf.edu/

About McGill University:

McGill University, founded in Montreal, Quebec in 1821, is Canada’s leading post-secondary institution. It has two campuses, 11 faculties, 10 professional schools, 300 programs of study and more than 33,000 students. Since 2000, more than 800 professors have been recruited to McGill to share their energy, ideas and cutting-edge research. McGill attracts students from more than 160 countries around the world. Almost half of McGill students claim a first language other than English including 6,000 francophones with more than 6,200 international students making up almost 20 per cent of the student body.

About The Neuropathy Association Established in 1995, The Neuropathy Association is the leading national patient-based nonprofit organization whose mission is to provide patient support and education, advocate for patient's interests, and promote research into the causes of and cures for peripheral neuropathies. With more than 50,000 members and supporters and over 130 support groups, the organization works to connect patients with one another through its active network of members, regional chapters, Association-designated neuropathy centers and support groups. Currently, it has a network of 12 Association-designated neuropathy centers at major university hospitals across the U.S. serving patients with neuropathy and conducting research. For more information about peripheral neuropathy, The Neuropathy Association or the Association’s annual Scientific Research Grant Program, please visit http://www.neuropathy.org.