GBS CIDP Foundation

Nice viewing point on my GoFundMe picture, isn't it? And so many more trails to hike according to the sign! I am grateful I am healthy and can still pick any of those beautiful mountain hikes. Unfortunately, many of us do not have that luxury and many different illnesses prevent many more hopes and dreams. Hence why I would love to raise funds for medical research, to help prevent, cure or treat diseases. In this case: for the GBS | CIDP foundation.

Why raise funds for this foundation?

Since CIDP is relatively rare, it is not as popular for the bigger fundraisers globally. I would like to create more awareness for this disease and support its research projects. The GBS | CIDP foundation supports patients with GBS, CIDP or similar conditions, as well as educate medical professionals and caregivers, fund research through grants and advocate at different policymakers to help them make informed decisions that benefit the patient community.

How do we raise funds for this?

On Sunday 25.2 I will run 10km (a competition) in the City of London, and it would be great if you can support me throughout the run, by donating to the charity! If you are interested how I've managed the run, feel free to reach out, leave a comment and I will let you know. :)

For more information on CIDP: https://www.gbs-cidp.org/cidp/

For more information on GBS: https://www.gbs-cidp.org/gbs/

For more information on the mission of the GBS | CIDP foundation: https://www.gbs-cidp.org/about/mission/

The foundation's centers of excellence are everywhere: in the Netherlands, Germany, United Kingdom and many more countries. For more information on Centers of Excellence: https://www.gbs-cidp.org/support/centers-of-excellence/

James Wood Bradner, IV passed away last week after a brief battle with cancer. Jim was one of the volunteer parent team leaders of a group of girls who played travel soccer together with the Richmond Strikers between about 2001 and 2010. Jim's daughter Pierce was a key member of the team. The team had many successes over the years culminating in winning the 2010 U17 Girls Virginia State Cup Championship.

Jim was a constant source of positive energy and fun throughout these years. He was always selfless and empathetic in his support of all the players and their families through the constant highs and inevitable lows we all experienced during these ten plus years of competitive travel soccer.

Jim and his family have asked that contributions made in his memory be given to benefit the GBS CIDP Foundation, or the University of Virginia Cancer Center. The members, parents, families and friends of this team have set a goal to raise at least $10,000 for the GBS CIDP Foundation in Jim's honor and memory. The GBS CIDP Foundation became a focus for Jim, his wife Lou and Pierce after Jim's other daughter Caroline contracted GBS overseas. Thanks to treatment abroad and at home, Caroline survived that debilitating and life-threatening illness.

Jim epitomized what it means to be a good person and how to lead a good life. He will be greatly missed and and any donation will help make an impact. Thanks in advance for your contribution to this cause that means so much to the Bradner family.

Hi I am Emma (Author/Illustrator) or the book Bree's Like Me. I co-wrote this book with my mother Julie Bell who has lived with CIDP for 29 years. I was 4 at the time she was diagnosed and as a family we have navigated the good, bad and ugly of this disease together. My mother is a true fighter and my role model. Together we created a story to help kids who have CIDP, GBS and MMN or have parents/siblings with CIDP, GBS and MMN understand their diagnoses and be able to talk about it. We will be printing this book for the annual CIDP/GBS Foundation International Symposium. (https://www.gbs-cidp.org/)

We have journey through CIDP for many years as a family and are thrilled to make the dream of publishing this book a reality. We are asking for donations so that we can provide this book printed to families and patient with these diseases at no cost to them.

There will be 3 version of the book one for each of the diseases.

What is Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)?

Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) is a rare disorder of the peripheral nerves characterized by gradually increasing sensory loss and weakness associated with loss of reflexes. The number of new cases per year of CIDP is about 1-2 per 100,000 people, but as the disease can be present in a person for years prior to diagnosis, the prevalence reflecting the accumulation of cases over time may be as high as 9 per 100,000 in some areas. CIDP is caused by damage to the covering of the nerves, called myelin. It can start at any age and is more frequent in men than women. Many people with CIDP benefit with treatment. Although there is a wide spectrum of how severely people with CIDP can be affected, some with the condition require assistance to perform daily tasks. In the more severe cases devices like wheelchairs or walkers may be needed for mobility. One of the goals of early diagnosis and proper treatment is to avoid this level of disability and to improve the long term outlook.

What is Guillain-Barré Syndrome (GBS)?

Guillain-Barré (Ghee-yan Bah-ray) Syndrome is an inflammatory disorder of the peripheral nerves outside the brain and spinal cord. GBS is characterized by the rapid onset of numbness, weakness, and often paralysis of the legs, arms, breathing muscles, and face. Paralysis is ascending, meaning that it travels up the limbs from fingers and toes towards the torso. Loss of reflexes, such as the knee jerk, are usually found.

What is MMN?

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. Patients frequently develop weakness in their hand(s), resulting in dropping of objects or sometimes inability to turn a key in a lock. The weakness associated with MMN can be recognized as fitting a specific nerve territory. There is essentially no numbness, tingling, or pain. Patients with MMN can have other symptoms, including twitching, or small random dimpling of the muscle under the skin which neurologists call fasciculations. The clinical course of MMN is chronically progressive without remission. 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, a spontaneously self-limiting disorder in which 1-2/100,000 cases occur each year in North America and Europe. MMN has many features similar to CIDP in that its onset is progressive over time, causing increased disability that reflects the greater number of nerve sites involved. However, unlike CIDP, MMN is asymmetric and affects the right and left side of the body differently. Unlike other forms of chronic nerve inflammation, it is thought to never remit. However appropriate treatment that is FDA approved does limit progression and improves function.

We appreciate your help and support in this endeavor. You can read more about my mom's journey here - https://www.gbs-cidp.org/patient-stories/julies-story/

Thanks,

Emma