Support research towards Meningitis and Encephalitis
Worldwide nearly 10 million people get Meningitis or Encephalitis (brain inflammation). A large part of them dies or gets permanent residual symptoms. That is why the ItsME Foundation was established in 2019. The "M" stands for Meningitis and the "E" stands for Encephalitis. This is about keeping the brain healthy because your brain is who you are. “It's me…”
We are raising money to enable scientific research in the fight against Meningitis and Encephalitis. This is badly needed. Together we can increase the chances of a cure, "The power of WE is stronger than the power of ME".
Meningitis & Encefalitis
What is Meningitis?
Meningitis is inflammation of the membranes that surround the brain and spinal cord. Meningitis can be caused by a virus or bacteria. It is also called neck spasm. Viral inflammation is the less severe variant and usually heals within one to two weeks. Bacterial meningitis often starts as septicemia, where the bacteria infect the bloodstream. Bacterial inflammation is caused by one of three bacteria: meningococcus, pneumococcus or Haemophilus influenzae type b (Hib).
The aforementioned bacteria are (harmless) in the nasopharynx. If at some point the resistance decreases, the bacteria can multiply and spread through the bloodstream. This can lead to blood poisoning (this especially applies to the meningococcus). In addition, the bacteria can enter the brain and meninges through the bloodstream and cause meningitis. The bacterium can be killed quickly with antibiotics. After contracting meningitis, people can continue to suffer from the consequences that can be different for each individual. This can occur to a greater or lesser extent.
What is Encephalitis?
Where in Meningitis the cerebral membrane (located around the brain to protect the brain) is inflamed, in Encephalitis the brain itself is inflamed. In encephalitis, nerve cells or the white matter of the brain are directly damaged. Encephalitis is usually caused by viruses, sometimes by bacteria. The most common cause is the cold sore virus, also called the herpes simplex virus. It is not known exactly why herpes simplex causes encephalitis in some people. Other viruses can also cause Encephalitis, but are more rare.
An example of this is Encephalitis Lethargica (also called sleeping sickness). An immune system response can also be a cause (Anti-NMDAR Encephalitis) and in some cases Encephalitis can be caused by a mosquito (Japanese Encephalitis). When the inflammation causes the brain to swell, the skull stops the swelling, causing the swollen brain to look for a different direction. This allows them to press down on the brainstem. From this part of the brain, vital functions such as breathing and heart rate are regulated. If this situation is left untreated, the brain pressure rises and the brainstem can stop functioning and the patient will die.
Facts & figures
Worldwide, nearly 10 million people a year develop Meningitis or Encephalitis. A large number of them die or have permanent residual symptoms. Meningitis mainly occurs in babies and young children (under the age of five), but adults can also get the disease.
- Annually, approximately 2.8 million people get Meningitis, of which 303,000 with a fatal outcome.
- Annually approximately 6.5 million people develop Encephalitis, of which 77,300 with a fatal outcome.
Estimates from the WHO Global Burden of Disease Study
- Annually, approximately 45,000 people in Europe develop bacterial Meningitis, of which 20% dies and a total of approximately 20,000 people die or have sequelae.
- Annually, approximately 80,000 people develop viral Meningitis, of which 1% dies and approximately 20% has residual symptoms.
- Annually, approximately 80,000 people a year develop Encephalitis. About 11,000 patients die and about 26,000 people have residual symptoms.
- Every year approximately 1,000 Dutch people develop bacterial Meningitis, of which 20% dies.
- For viral Meningitis, this concerns approximately 2,000 patients annually, of which 1% dies and approximately 20% has residual symptoms.
- Encephalitis is about as common as viral meningitis, so also 2,000 people per year. Hereof an estimated 14% dies. About one third of the patients have sequelae.
Start an action yourself or join with your team, your fraternity or sorority, your class or your cycling club to raise money or to link the ItsME Foundation to an event. Think for example of Bike4ME, Drive4ME, Kite4Me, Dine4ME, Run4ME, Golf4ME. We like to think along with you.
"Meningitis and encephalitis have a huge impact on patients, their families, and society. We all have a lot of bacteria and viruses with us. We need to know how it is possible for one person to stay healthy, the other to become critically ill, but recover. , and someone else dies. Knowledge about causative bacteria and viruses, the patient with meningitis or encephalitis, and, most complexly, the pathogen-patient interaction is essential to prevent and cure the meningitis and encephalitis.”
"In 2017, my cousin and godchild Jur Deitmers looked the death in the eye at the age of 21, after a totally unexpected viral encephalitis. The unprecedented determination of American and Dutch specialists, including neurologists and virologists, and the extreme dedication of his parents and family, has allowed him to survive the virus. This would never have succeeded if actions had not taken place outside the protocols. This is a tremendous motivation for me to work for ItsME.”
"My husband Bart Verdegaal passed away in 2004 at the age of 39, when our twins were 13 months old, from meningitis. This against all odds of the university hospital where he was treated. Not because mistakes have been made, but because there are simply too many uncertainties in the treatment. This is an enormous motivation for me to work for ItsME.”
"I firmly believe that current protocols are not sufficient for the cure of Meningitis and Encephalitis. The money raised by ItsME Foundation will be spent on specific research to ensure that patients, just like Jur Deitmers, can survive this disease. This is an enormous motivation for me to work for ItsME.”
"Meningitis and encephalitis can be devastating and debilitating diseases. We need to have a better understanding about how and why there are varied outcomes amongst our population. I believe there is more we can do beyond the current standard of care to provide better outcomes. With the help of ItsMe we can develop more diverse treatment options for those affected. I am extremely proud of Jur and all he is doing to bring attention to a very worthy cause.”
"Infections of the central nervous system pose potentially catastrophic debility to those affected because of the general lack of redundancy in the function of neurons. For example, despite the availability of the antiviral drug acyclovir, patients with herpes simplex encephalitis (HSE) still encounter tremendous morbidity and mortality, with almost 1/3 suffering permanent brain damage or death. Scientific data exists which points toward better therapies, but the translation of this knowledge to the clinic lags far behind. With the efforts by ItsMe, we hope that the Truth will find an easier path to the way patients with HSE and other serious viral infections are treated. Jur is an example of can happen when this path is realized.”
"As a toddler of 2 years old I suddenly developed a high fever and subsequently weird spots on my skin. I was rushed to a hospital and my parents were informed that I was unlikely to survive the night. My first memory dates from then. I know I was alone in a dark room and it was very quiet with the occasional people in white coats. Not fearful, but serene tranquility. Later my parents told me that I have had meningitis and specifically the blood variant. It wasn't until later in life that I understood the seriousness of the disease, the happiness I had (in the late 1960s), and I am grateful living a healthy life!”
An ANBI is a public benefit organization. ItsME Foundation has obtained the ANBI status in 2020 rendering your financial support deductible for tax purposes. It also means that ItsME does not have to pay tax on donations. For more information, visit the website of the Belastingdienst.