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Stand Up For Peripheral Neuropathy

Take Action Now!

On behalf of the more than 20 million Americans living with peripheral neuropathy, The Neuropathy Association—along with its nationwide network of 15 Neuropathy Centers of Excellence, 135 Volunteer-Led Neuropathy Support Groups, and 4 Chapters—continues to work to advocate on behalf of all those struggling with neuropathy.

We request your participation in a letter-writing advocacy campaign to bring the voices of patients, family members, and healthcare providers to the appropriate representatives and/or opinion leaders.

Recipients

  • President Barack Obama
  • Your Senators
  • Your Representative
  • Your Governor
  • Your State Senator or Senators
  • Your State Representative or Representatives

Message

Stand Up for Peripheral Neuropathy

Dear [Decision Maker],

As your constituent, I am writing to say I AM STANDING UP -- in observance of National Neuropathy Week (May 16-20, 2011) -- to be counted as someone who cares about Peripheral Neuropathy.

I do so on behalf of the OVER 20 MILLION AMERICANS WITH NEUROPATHY (damage to the peripheral nervous system), many of whom cannot stand or walk without devastating pain, weakness and/or numbness.

You need to know that:

NEUROPATHY IS THE MOST COMMON CHRONIC NEUROLOGICAL DISEASE IN THE U.S.

- One of the leading causes of adult disability, neuropathy afflicts 1 in 15 Americans.

- Peripheral neuropathy is not a disease of aging. Neuropathy Association national patient polls show that 82% OF PATIENTS EXPERIENCE NEUROPATHY'S ONSET BETWEEN THE AGES OF 30-69... at a time when most people are building lives and livelihoods.

- 1/3 of neuropathy cases are caused by diabetes. AT LEAST 50% OF ALL DIABETICS HAVE DIABETIC PERIPHERAL NEUROPATHY, which is painful, debilitating, and can lead to amputations.

- 1/3 of neuropathy cases have a range of causes including autoimmune disorders, heredity, cancer (the treatments as well as the tumor), HIV/AIDS (the treatments as well as the virus), trauma, nutritional imbalances, infections and toxins. In fact, 15-20% OF ALL CANCER PATIENTS SUFFER FROM NEUROPATHIC PAIN.

- And, 1/3 of neuropathy cases are termed "idiopathic," or of no known cause.

DESPITE ITS HUGE IMPACT, NEUROPATHY REMAINS LARGELY IGNORED. A growing public health crisis, neuropathy gets little attention by public officials, health care providers, and the media.

- Peripheral neuropathy is rarely included in discussions about the most pressing health issues impacting our Nation's health -- resulting in persistent challenges for patient access to treatments and care.

- Peripheral neuropathy RESEARCH IS SEVERELY UNDERFUNDED -- even though neuropathy research could benefit a wide range of neuromuscular and other diseases, improving the health of all.

- FOR AN ILLNESS WITH OVER 100 KNOWN TYPES, THERE ARE NO TREATMENTS FOR THE UNDERLYING DISEASE STATE. Only five FDA-approved treatments exist for symptoms of three types of neuropathy.

- Because of this lack of understanding and attention, AUTOIMMUNE NEUROPATHY PATIENTS HAVE DIED WHEN ACCESS TO THEIR ONLY TREATMENT OPTION, IVIG (INTRAVENOUS IMMUNOGLOBULIN), WAS DENIED BECAUSE OF REIMBURSEMENT CHANGES within the Medicare Modernization Act.

As a result, THOUSANDS ARE BEING LEFT TERRIBLY ALONE AND ABANDONED WITH THEIR ILLNESS AND:

GO THROUGH YEARS OF MISDIAGNOSIS OR MISTREATMENT -- while their nerves suffer irreparable damage -- due to lack of awareness by healthcare providers, family and friends.

Cry at night because they CAN'T SLEEP WITH THE PAIN ... only to be told by others during the day, "You don't look sick."

SUFFER FALLS AND ACCIDENTS because leg and arm muscle weakness, plus lack of sensation, impairs their mobility.

EXPERIENCE CONSTANT, UNREMITTING PHYSICAL SENSATIONS -- including burning, walking on cut glass, and electrical shocks.

I AM ASKING YOU to recognize the urgency of bringing help and hope to the peripheral neuropathy patient community.



PLEASE HELP US ENSURE PERIPHERAL NEUROPATHY IS NO LONGER IGNORED OR DISREGARDED. This silent epidemic places huge human and healthcare burdens on our Nation costs which will increase exponentially if left unaddressed.

UNTIL WE HAVE BETTER TREATMENTS AND CURES, EVERY WEEK NEEDS TO BE NATIONAL NEUROPATHY WEEK.

Please join me in standing up for neuropathy. Together, with your help, we can change the future.

Thank you for your support.

Sincerely,
[Your Name]
[Your Address]
[City, State ZIP]

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