February is Multifocal Motor Neuropathy(MMN) Awareness Month
MMN (Multifocal Motor Neuropathy) is a rare disorder in which focal areas of multiple motor nerves are attacked by one’s own immune system. Typically, MMN is slowly progressive, resulting in asymmetrical weakness of a patient’s limbs. The clinical course of MMN is chronically progressive without remission and the prevalence of this very rare disease is estimated to be 0.6 cases in every 100,000 people, which makes it even rarer that GBS and a spontaneously self-limiting disorder in which 1-2/100,000 cases occur each year in North America and Europe. (More information on MMN is available.)
If you have MMN, or know someone who does, you are not alone.
In fact, in recent years, more and more patients and caregivers from around the world have reached out to the Foundation for support with MMN. This year we are reaching back in very big way. February, 2022 will be the launch of the very first MMN Awareness Month! During February of this year, and many years to come, the GBS|CIDP Foundation International will bring focus, research funding, and unique ways to connect, to our MMN Community. Many events and initiatives have already been planned, and the Foundation has designed many ways for patients, friends and family of those affected, to learn more and show they care for MMN. Our month-long calendar of events and ways to get involved is below.
February 1, 2022
Take a Ride for MMN! #RIDEforMMN
Mutlifocal Motor Neuropathy (MMN) affects patients in so many different ways. In fact, no two journeys are ever really the same and symptoms may be as unique and rare as the condition itself. And like the journey of MMN itself, there’s more ways than one to RIDE for MMN and raise awareness too. While you might be not be inclined, or even able, to take a traditional bike ride, you are likely able to take a ride and spread awareness in some other way. How about a stationary bike ride? A car, bus or boat ride? Hot air balloon? Golf cart? Piggyback? Even a Ferris wheel or horseback ride would do! The RIDE for MMN starts February 1, 2022 and continues through March of 2022. Learn how to create your own personal fundraising page here. Don’t forget to take a pic, include the hashtag #RIDEforMMN, and take a RIDE for MMN! We are happy to post pics for you on our social channels as well. Send pic to Hope.firstname.lastname@example.org.
February 3, 2022
Ask the Experts MMN Edition
Clive Phillips interviews a leading New Zealand Neurologist and MMN specialist, Dr. Gareth Parry. Dr. Parry is a frequent contributor to Foundation educational events and webinars, and co-hosted our first Chapter Meeting in Sydney Australia in 2020. The Ask the Experts episode, airing on February 3, will touch on all aspects of MMN – what it is, what research is being done, and how to cope. It will endure on our website through 2022 for on-demand and multiple viewing.
February 8, 2022
MMN Awareness Month Coffee Chat – 1:00 – 2:00PM (EST)
Join co-hosts and MMN patients, Clive Phillips and Brenda Perales, on our ZOOM MMN Awareness Month Coffee Chat. Share stories, meet others in a similar situation, give or get some tips and advice, and have a little fun too. Register today (Seating is limited, so don’t wait!)
February 14, 2022
Many patients living with MMN or Variants regularly receive intravenous immunoglobulin (IVIG) subcutaneous immunoglobulin (SCIG) to treat the condition. Flooding a person’s system with antibodies from normal, healthy individuals can reverse problems caused by abnormally overactive immune systems. You may or may not know, immunoglobulin – whether given as IVIG or SCIG – is created from source plasma that is donated from healthy people. How can you help? We are dedicating February 14 of MMN Awareness Month to our ongoing Plasma Please campaign! Please Find out how and where to donate plasma here.
February 24, 2022
LIVE Webinar, Living with Multifocal Neuropathy – 12:00 – 1:00PM (EST)
The GBS|CIDP Foundation International, in collaboration with PlatformQ, is pleased to announce a LIVE program highlighting Multifocal Motor Neuropathy (MMN). In this program, you will learn more about recognizing and coping with the condition of MMN, from both physicians and patients. Guest speakers include Dr. Jeffrey Allen of the University of Minnesota, Jen, an MMN patient, and Kelly McCoy, Associate Director of Engagement for the GBS|CIDP Foundation International. Registration coming soon. A link to the broadcast will be sent to you prior to the event.
February 28, 2022
Rare Disease Day
Rare Disease Day (RDD) takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. This year the GBS|CIDP Foundation International is dedicating its efforts to raising awareness for MMN. Join our social campaign #Rarediseaseday #RideforMMN. Show you care for rare by giving a shout out to the MMN community and using the rare disease graphics (You can find them at https://www.rarediseaseday.org) or follow Clive Phillips along on the #RideforMMN journey, as he makes so unique and powerful connections on Rare Disease Day.
Discover MMN Patient & Caregiver Stories…All Month Long
Our story portal has many personal journeys of patients and caregivers with GBS, CIDP and variants such as MMN. Visit the Patient Story page and learn more about the community, what you may expect in your MMN journey, and how others stay positive through these types of health challenges and beyond.
SUPPORT our MMN Research Grant
Although we are dedicating February to MMN awareness, our MMN members need your support all year long. Please consider a donation today, or whenever possible, to our MMN Research Grant Fund, and be a part of the solution for those suffering with MMN.