GBS | CIDP Foundation International

I honestly don’t know where I would be right now without the foundation. When I was first diagnosed with MMN I really struggled. My Neurologist kept encouraging me to reach out to the foundation. I finally did and they welcomed me with open arms, they encouraged me to share my story, which led to advocating, which led to being on the board….they gave me the purpose I so desperately needed to move forward. 

As I first became acquainted with the Foundation’s work—15 years ago—I was inspired to support and further the organization’s efforts in any way I could. Realizing that liaison work could have such a positive impact on recovering GBS patients, I volunteered, had training, and began to talk with patients/families affected by these disorders. That along with the Foundation’s efforts in advocacy, research and education, inspired me to do all I could.

I’m appreciative of all the support from the foundation and all its efforts on behalf of the GBS/CIDP community.

Thank you for creating a safe, supportive and open environment for women to be vulnerable and share their true feelings. And for providing practical help as well.

Living with GBS and CIDP has been one of the most challenging experiences of my life, but this foundation has truly been a lifeline. It has provided me with invaluable knowledge about my condition and the treatment options available, which has given me hope and a clearer path forward. Every year, the walk becomes a reminder that I’m not alone—meeting new friends who understand what I’m going through has been an emotional and empowering experience. The bond we share, forged through our common struggles, is something I hold close to my heart. What means the most to me, though, is knowing that the funds raised by this foundation are directly supporting research that could change the lives of those of us living with GBS and CIDP. It’s not just about fighting this battle together; it’s about giving us all a brighter future. This foundation has provided me with more than just information—it has given me a sense of community, hope, and a renewed belief that we can make a difference.

This was my first Coffee Chat for seniors, but it definitely won’t be my last! It was terrific to both share and hear stories about living with rare conditions like GBS, CIDP and MMN. I was impressed that the meeting host was none other than foundation founder Estelle Benson! Thank you for a wonderful event!

I needed a community. When the progression of my illness started, like many people with CIDP, it took several years before the professional were finally able to figure out what is going on in my body. But during that timeframe, you begin to deteriorate. The professionals came to me and said ‘we think you are suffering from this rare chronic illness, CIDP’. CIDP was affecting me in several ways from my ability to walk to my ability to grab things and use my hands. And when you go through this, you’re naturally worried and confused. I couldn’t work anymore. I found myself struggling, more and more and more. My main adversary were the steps in my home. We had several flights of steps in our home and those steps began to challenge me in ways I hadn’t imagined. I looked around and said, what is going on here? I looked around and found the GBS|CIDP Foundation International. Not only was there a community of people to provide a sense of comradery and the emotional support to get through this. But there were tools there, too. There were active suggestions there. There was a list of hospitals that were Centers of Excellence that had gone through standards of approval by the medical board of the Foundation. There was information on research being done and partnerships being built with biopharma organizations. There were lists of helpful resources like how to reduce the cost of your medication and that list went on and on. This Foundation added such utility to me and my family and working to resolve my illness.

The GBS|CIDP Foundation should be considered the Center of Truth, where potential patients can get their questions answered, discuss treatment options with doctors, and most importantly, meet and make friends with others dealing with similar circumstances

One of our Spanish speaking patients was in dire need for support and information, we sent him to the Foundation website, and he was able to translate everything into Spanish! It was just what he needed! We never knew where to send our GBS or CIDP patients, now we do!

Advocacy is my passion, and the Foundation has given me so many opportunities to share my story, spread the word about MMN and fight for a better tomorrow. 

The GBS CIDP Foundation is the only place that really supports MMN. They embraced MMN Awareness Month, Riding the World for MMN and Making the Most of Now and ear marked any money raised for MMN research….that gives me so much hope for my future and those who come after me. 

I am filled with gratitude towards the foundation and all the people and doctors who support it. Dr. Diana Castro was amazing; finding a doctor so dedicated, open and compassionate is rare in the medical field.

Once I was diagnosed, I searched all over to find support directly for my condition. Unfortunately, there was nothing, and I decided to volunteer with the Foundation to be the missing piece for people like me to find support, friends, and hope.