Multifocal Motor Neuropathy (MMN) Awareness Month
If you have MMN, or know someone who does, you are not alone. 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.)
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. During February, MMN Awareness Month, the GBS|CIDP Foundation International will bring even more focus to MMN research funding as well as unique ways to connect to our MMN Community. Many events and initiatives have already been planned, and the Foundation has designed a variety of ways for patients, friends, and family of those affected, to learn more and show they care for MMN.
Check Out Our Weekly MMN Awareness Activities All Month
February MMN Event Calendar
*all events are in Eastern Standard Time (EST US)
Events coming soon.
Here are ways you can get involved and make an impact this February:
A Worldwide Bicycle Ride for MMN Awareness Month!
Multifocal 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. Are you or a loved one affected by MMN? Join us in the RIDE the World for MMN, show your support for the community, and encourage your network to support MMN research too. Participate in the Ride for MMN here.
- Share your story. Whether you share your story on social media or at an event, we encourage you to get the word out about your rare condition. You can also submit your story through our online story portal, which will be shared on our social media channels throughout the month.
- Connect with the Foundation and others in the MMN community by joining our virtual events.
- Shop and Raise Awareness. Want to support MMN Awareness Month and the Ride for MMN? Click here to purchase MMN awareness apparel on our new Bonfire site. Don’t forget to wear it out and bring awareness to your condition.
- Educate your Healthcare Professionals about your condition and share the resources from the Foundation here.
- Join our advocacy efforts in raising awareness of donating plasma. Learn more here.
- Learn more on donating to our Research Grant program including a grant for MMN Research.
- Use Social Media to Share Your Story. Throughout the month, the Foundation will post educational content about MMN on our social media channels. You can share our content to promote MMN awareness to your social media friends or download the content here. Don’t forget to tag the Foundation in all your awareness posts! (The Foundation is now on TikTok!) You can also submit your story through our online story portal, which will be shared on our social media channels throughout the month.
Meet our MMN Task Force Team
Brenda Perales, MMN Patient
Before I was diagnosed with MMN I had a very full life as a military wife and Mom raising my two wonderful sons. My life was full of travel, volunteering, sports, baking, dinner parties, book clubs with friends and dabbling in interior design. I started to notice something was wrong with my legs in 2011 and by 2012 I was struggling to walk 50 feet and it just kept getting worse. After finally being diagnosed with MMN (by way of ALS) in 2013, I struggled for the next two years with what this diagnosis meant for the rest of my life. Luckily I found the GBS CIDP Foundation International through my neurologist and started getting involved doing advocacy work for MMN and helping newly diagnosed patients. From there I started sharing my story to bring awareness to MMN at Rare Disease Summits, PPTA Panels and programs, AANEM Conferences, groups on social media, and special events through companies that work on rare diseases. I advocate for patients on Capitol Hill several times a year and in 2019 I was elected to the GBS CIDP Foundation as a board member. Being a board member has allowed me to help grow the MMN focus, education, and community at the Foundation. In 2022 I was very excited to be a part of Congress recognizing February as MMN Awareness Month. Being an advocate has helped propel me forward with a new purpose in my life and I am so grateful! When I am not advocating for MMN I am spending time with the people I love, still doing the things I love, taking one amazing day at a time.
Clive Phillips, MMN Patient
Clive is a dedicated volunteer and the originator of the Ride the World for MMN fundraiser for research. Clive was diagnosed with Multifocal Motor Neuropathy (MMN) in late 2019. At that stage he couldn’t give a thumbs up, and it looked like his days of cycling might be numbered as the condition started to affect his feet and ability to properly hold his bikes handlebars. However, his condition improved after starting IVIG treatment and he felt he had been given a second chance to take on some bucket list biking challenges. This sparked a desire to want to make a difference to the MMN community and The Making the Most of Now project and Ride for MMN were born. Clive says his mission is to “ensure that the MMN I worry, and anyone with a rare neurological condition worries about, is Making the Most of Now!”
Edward Gent, MMN Patient
I am 27 years old and diagnosed with MMN (Multifocal Motor Neuropathy). The only way I can describe myself is as quite the outlier! 1 in 100,000 people are estimated to have MMN, of which I may be the only one who (despite the dexterity becoming a real challenge!) is a software engineer and former amateur boxer-turned Nutritionist. If that isn’t eclectic enough, I am fluent in French and can speak rudimentary Arabic and Russian. My real passion is improving the lives of many of the other patients around the world in partnership with the Foundation through movement, nutrition, and healthy living.
Richard Sperry is a patient living with Multifocal Motor Neuropathy (MMN) and was diagnosed with the condition in early 2020. He was introduced to the Foundation in 2022 and has been an active member of the Foundation community since then.
Richard has over 20 years of diverse healthcare experience, most recently as CEO of AdheaRx, an innovative healthcare technology startup. Before leading AdheaRx, Richard enjoyed an 18-year career at Novo Nordisk, Inc. where he served as a member of the Executive Team after taking on roles of increasing responsibility across various commercial functions. Additionally, Richard lived and worked in Spain for several years prior to his career in healthcare.
Richard is a member of the Board of Directors of the non-profit Hope Loves Company and has held Board positions at the Latin American Legal Defense and Education Fund (LALDEF) and the Princeton Mercer Regional Chamber of Commerce.
Richard resides in Pennington, New Jersey with his wife Maria and their three teenage daughters.
After nearly seven years of seeking answers, Pam Stoikopoulos was diagnosed with Multifocal Motor Neuropathy in 2018. She quickly immersed herself in the MMN community and was so grateful for the support she received that she joined the Canadian GBS|CIDP Foundation Board of Directors in early 2021. Since then, she has run the Canadian foundation’s MMN support group meetings, and fundraisers, and led strategic planning sessions.
Even before diagnosis, Pam spent close to two decades working in health care as a strategic consultant, leader, and advocate. In late 2021 she founded Big Eye Innovation with a focus on helping health care organizations improve and innovate while enhancing the patient experience.
Pam is excited to work with the GBS|CIDP International Foundation to help bring global awareness to MMN!
She lives in Toronto, Canada with her husband, three boys, and cat. In her spare time, she loves planning her next travel destination…
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