Neuropathy Action Foundation and GBS/CIDP Foundation International Launch Multifocal Motor Neuropathy (MMN) Campaign to Raise Awareness of Rare Neurological Condition
Educational Brochure and Public Service Announcement Intended to Help with Early and Accurate Diagnosis of Serious Condition
SANTA ANA, Calif., Aug. 15, 2013 /PRNewswire/ — The Neuropathy Action Foundation (NAF) and the GBS/CIDP Foundation International (GBS/CIDP) today announced the launch of a joint nationwide campaign to raise awareness of Multifocal Motor Neuropathy (MMN), a rare and incurable neurological condition in which multiple motor nerves are attacked by the immune system. The national campaign will include an educational MMN-specific brochure, as well as a public service announcement (PSA) to help patients and medical professionals identify, treat and manage the progressive condition.
“Multifocal Motor Neuropathy is a serious but treatable condition where early and accurate diagnosis is critical to preserving the livelihood of those touched by the disease. The ability to control the progression of MMN is directly related to how quickly the disease is correctly diagnosed,” said NAF Founder and MMN patient Dominick Spatafora. “I was originally diagnosed with ALS and told that I had only three-to-five years to live. It took more than a year before I was correctly diagnosed with MMN and began receiving the life-sustaining IVIg treatments that continue to help me ten years later.”
Although MMN is a rare disease – likely affecting no more than 1 to 2 in 100,000 people – it can cause serious disability if not correctly diagnosed. Most MMN patients are originally misdiagnosed multiple times before correctly being diagnosed with MMN, and correct diagnosis may take years.
“This joint project provides a truly first class and comprehensive resource for people interested in getting information on MMN,” said GBS/CIDP Foundation International President Philip Kinnicutt.
MMN tends to begin in the hands, and symptoms may include weakness, twitching, muscle atrophy or small random dimpling of the muscle, which neurologists call fasciculations. Men are twice as likely as women to be affected. Most patients are in their 40s to 60s, although MMN has also been diagnosed in patients between the ages of 20 and 80. Intravenous immunoglobulin (IVIg) treatments provide benefits to most patients with MMN, with the individual response varying from minimal to significant. IVIg is not a cure for MMN and currently no other therapy has proven effective.
To view the PSA, please click here.
The Neuropathy Action Foundation (NAF) is dedicated to ensuring neuropathy patients obtain the necessary resources and information to access individualized treatment to improve their quality of life. The NAF increases awareness among physicians, the general public and public policy officials that neuropathy can potentially be a serious, widespread and disabling condition, which may be treatable when appropriate medical care is provided. For more information, visit www.neuropathyaction.org.
About GBS/CIDP Foundation International
The GBS/CIDP Foundation International’s mission is to assist patients stricken with Guillain-Barre syndrome (GBS), chronic inflammatory demyelinating polyneuropathy (CIDP), and related diseases. These paralyzing and potentially catastrophic diseases of the peripheral nerves are rare, the causes unknown, and the length of the diseases unpredictable. The Foundation is dedicated to improving the quality of life for individuals and families worldwide affected by GBS, CIDP and variants. Our mission is carried out via our 175 international chapters with more than 35,000 members in 45 countries. www.gbs-cidp.org
Sarah Metter, (877) 512-726
Ken Singleton, (610) 667-0131
Video with caption: “Multifocal Motor Neuropathy (MMN)”. Video available at: http://www.youtube.com/watch?v=OjOg_YIwhcE&feature=plcp&nomobile=1
SOURCE GBS/CIPD Foundation International