Showing posts with label nonprofit. Show all posts
Showing posts with label nonprofit. Show all posts

Sunday, May 24, 2009

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

Wednesday, January 28, 2009

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.

Neuropathy Information on you tube

Monday, January 5, 2009

My promise to you in our search for a cure of Neuropathy

Happy New Year....It is 2009 and this is my promise to you to do my utmost in our
search for a cure for Neuropathy and it's variance's. As an advocate and support group leader I will do all that is in my power to assist and help anyone that needs support of any kind in there quest to survive as a patient, caregiver, friend or family member. Join me on this journey in seeking a cure and a better quality of life to all who suffer from Neuropathy.

Contact me: david-hines@hotmail.com

Warmest Regards,
David Hines
Patient advocate
Peripheral Neuropathy, Idiopathic Progressive Polyneuropathy, CIDP, Disturbance of the skin sensation, Diabetic Painful Neuropathy (DPN)

Saturday, December 27, 2008

Advocate in Training

I'm a advocate in training but I didn't know my training would be so over bearing. Not that I am complaining. Not at all. I will be 49 years old next month and I will be in by 3rd year with peripheral neuropathy-CIDP. I've come along way and I still want to learn and help in the search for a cure. I was thinking I would not see a cure in my lifetime but I've come full circle and I must believe that a cure will be found soon. We need to work together and beat PN.

As you all know I get sidetracked with my blog and I get off message. But my heart (my hands and feet)are in the right direction. I've come in contact with a number of advocate and lobbying groups that want better healthcare for us and more research which means more dollars from Washington, DC.

Please keep up the hope and lets keep hope in motion.

David Hines
www.neuropathyaction.org
www.neuropathy.org
www.plasmaalliance.org

Saturday, November 22, 2008

"Learning to Trust the Master"

A man and his dog are in the same car. The dog howls bright-moon-in-the-middle-of-the-night caterwauling howls. The man pleads, promising a daily delivery of dog biscuit bouquets if only the hound will hush. After all, it’s only a car wash.
Never occurred to him—ahem, to me—that the car wash would scare my dog. But it did. Placing myself in her paws, I can see why. A huge, noisy machine presses toward us, pounding our window with water, banging against the door with brushes. Duck! We’re under attack.
“Don’t panic. The car wash was my idea.” “I’ve done this before.” “It’s for our own good.” Ever tried to explain a car wash to a canine? Dog dictionaries are minus the words brush and detail job. My words fell on fallen flaps. Nothing helped. She just did what dogs do; she wailed.
Actually, she did what we do. Don’t we howl? Not at car washes perhaps but at hospital stays and job transfers. Let the economy go south or the kids move north, and we have a wail of a time. And when our Master explains what’s happening, we react as if he’s speaking Yalunka. We don’t understand a word he says.
Is your world wet and wild?
God’s greatest blessings often come costumed as disasters. Any doubters need to do nothing more than ascend the hill of Calvary.
Jerusalem’s collective opinion that Friday was this: Jesus is finished.
Such is the view of the disciples, the opinion of the friends, and the outlook of the enemies. Label it the dog-in-the-passenger-seat view.
The Master who sits behind the wheel thinks differently. God is not surprised. His plan is right on schedule. Even in—especially in—death, Christ is still the king, the king over his own crucifixion.
Can’t he do the same for you? Can’t he turn your Friday into a Sunday?
Some of you doubt it. How can God use cancer or death or divorce? Simple.
He’s smarter than we are. He is to you what I was to four-year-old Amy. I met her at a bookstore. She asked me if I would sign her children’s book. When I asked her name, she watched as I began to write, “To Amy …”
She stopped me right there. With wide eyes and open mouth, she asked, “How did you know how to spell my name?”
She was awed. You aren’t. You know the difference between the knowledge of a child and an adult. Can you imagine the difference between the wisdom of a human and the wisdom of God? What is impossible to us is like spelling “Amy” to him. “For as the heavens are higher than the earth, so are My ways higher than your ways and My thoughts than your thoughts” (Isa. 55:9).
I keep taking Molly to the car wash. She’s howling less. I don’t think she understands the machinery. She’s just learning to trust her master. Maybe we’ll learn the same.
From Next Door Savior© (Thomas Nelson Publishers, 2006) Max Lucado.

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