Ataxia and Other Rare Disease Events

World Kidney Day is a global campaign aimed at raising awareness of the importance of our kidneys. World Kidney Day comes back every year. All across the globe many hundred events take place from public screenings in Argentina to Zumba marathons in Malaysia. We do it all to create awareness. Awareness about preventive behaviors, awareness about risk factors, and awareness about how to live with a kidney disease. We do this because we want kidney health for all. World Kidney Day is a joint initiative of the International Society of Nephrology (ISN) and the International Federation of Kidney Foundations (IFKF).

World Autism Awareness Week @Autism ⁩ ⁦ @NASCymru ⁩ ⁦ @AutismScotland ⁩

Brain Awareness Week began in 1996 as a modest effort involving just 160 organizations in the United States. DABI organized the first Brain Awareness Week to bring together diverse groups with different interests from academia, government, and professional and advocacy organizations. The goal was to unite them with the common theme that brain research is the hope for treatments, preventions, and possible cures for brain diseases and disorders and to ensure a better quality of life at all ages. In the 25 years since its founding, Brain Awareness Week has evolved into a global education initiative that has included the participation of more than 7,300 partners in 117 countries. During the 2019 campaign alone, more than 2,500 partner events were held in 50 countries and 45 states.

What is GRIN2B? GRIN2B is not the name of a disease or disorder, but is the name of a gene located on the 12th chromosome. Its function is to encode a protein that forms a receptor responsible for sending chemical messages to the brain. A variation on the GRIN2B gene means that some portion of this specific genetic code either got deleted, duplicated or rearranged. As of 2018, changes to the GRIN2B gene are now being referred to as GRIN2B-Related Neurodevelopmental Disorder.

March is nationally recognized as Bleeding Disorders Awareness Month. Join NHF in celebrating and honoring the bleeding disorders community. In 2016, thanks to NHF’s advocacy efforts, March was officially designated as Bleeding Disorders Awareness Month.

Rare Disease Day 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. The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

International Epilepsy Day is a special event which promotes awareness of epilepsy in more than 130 countries each year. Every year on the second Monday of February people join together to acknowledge and highlight the problems faced by people with epilepsy, their families and carers. #EpilepsyDay

Moebius Syndrome Awareness Day In 2011, Moebius Syndrome Awareness Day was started by the Many Faces of Moebius Syndrome, and has been embraced globally by other organizations that support efforts to raise awareness. The Moebius Syndrome Foundation recognizes the month of January as a time to raise awareness about this rare condition and educate the world about Moebius syndrome. We celebrate #MSAD by sharing information about Moebius syndrome, offering financial support and resources to approved events, encouraging people to wear purple, and raising awareness through various means and channels. (https://www.samebutdifferentcic.org.uk/ ) #Moebius

This is a platform where Katy Baker raises awareness of something that affects 1 in 15 people, rare disease. By chatting to patients, health professionals and advocates, we talk about all aspects of rare disease including relationships, mental health and much more. I cannot wait for you to hear some truly inspiring stories from some absolutely amazing people. From being diagnosed with a rare disease myself at 10 weeks old, it has given me the motivation to give others in the rare disease community an opportunity to share their thoughts and experiences.

Curious, knowledgeable wife of an Ataxian. My mission is to share reputable Ataxia information in short, simple, digestible servings. I want the world to become acquainted with Ataxia and the way it robs someone of their balance, coordination, ability to walk, talk, swallow, and see.