The ItsME Foundation, founded in 2019 by Jur Deitmers, is fighting against Meningitis and Encephalitis.
As an Economics and Philosophy student at Erasmus University Rotterdam (NL), I joined the Visiting Undergraduate Student program at Harvard University (US) in 2016. Friday morning March 10, 2017, after a very bad night, I woke up with a fever in my student house in Cambridge.
A few hours later I would catch a plane to Cabo San Lucas with my Swiss roommate Kevin Junker to celebrate Spring Break with a group of students in Mexico. We thought that it would pass and with acetaminophen it indeed was a lot better. Once arrived however, I still didn’t feel well. I then became completely disoriented and subsequently everything went really fast. A nightmare followed.
In the end, the Herpes Simplex Virus turned out to have caused a very serious Encephalitis. Fortunately, Kevin acted very accurately and saved my life. A medical fight ensued. First at a local hospital and then after being transported by a specially arranged air ambulance by a team of great doctors at the Sharp Memorial in San Diego. After being sub-comatose for a while and after the Acyclovir medication did not seem to have worked properly after the usual 3 weeks, specialists from America, the Netherlands and France were puzzled. An extremely stressful period followed (especially for my family because I was not aware of it myself) and very difficult decisions were made outside the protocols. In short, I eventually survived and was allowed to be repatriated to the Netherlands at one point.
Unfortunately, it soon turned out that an autoimmune reaction had caused me to get a second brain infection, this time an Anti-NMDAR Encephalitis. Another severe medical treatment followed, but now in the Amsterdam UMC. I have only now understood that surviving this combination of two brain infections is rather the exception than the rule. So, I was lucky! Based on my ‘case’, a number of protocol items were subsequently adapted at Sharp Memorial. I managed to recover well with a lot of guidance and attention from the people around me. However, I myself cannot compare it with the past, because I have lost more than 21 years of my memory. I no longer even recognized my mother, brother and sister… The question I now ask myself, also based on my Philosophy study, is: “Who am I if I do not know who I am myself?”
I am proud having been able to establish the ItsME Foundation in 2019 to enable more scientific research for both Encephalitis and Meningitis. I sincerely hope that you will support us so that eventually more people can survive these serious diseases.
Reny ten Haaf
It is Christmas 2002 and my husband Bart Verdegaal and I are fully enjoying our 14 month old twins Niek and Loek. Thursday January 2 Bart suddenly does not feel completely well. He mainly suffers from ear pain.
The doctor’s advice was clear: “Spray your nose and it will be fine.” At night he already felt very sick and had a high fever in the morning. We could see the doctor in the course of the morning. Suddenly Bart’s situation deteriorated and he was no longer approachable. Then everything suddenly went very quickly. Bart was taken to hospital in our hometown by ambulance. Frightful hours began.
Bart turned out to have a bacterial Meningitis: the ear infection had spread to the meninges. Since his situation did not improve, he was taken to the Amsterdam UMC the next morning. Fortunately, the treatment in the Amsterdam UMC was successful and after about a week Bart turned 39 in the hospital. He regained consciousness, we were able to talk to each other again and were happy that things were going so well again so quickly.
After another week, the doctors decided to stop the antibiotics and Bart was allowed to go home. Rehabilitation was necessary, but we were so glad this nightmare was over. Everyone who had sympathized intensely in these bizarre weeks already emailed and called and was looking forward to Bart coming home. What a party, we all thought. However, when I was in the car to pick him up, I got a phone call from the Amsterdam UMC… It was not going well with Bart. What is on your mind by then, so many questions, so many fears, so much uncertainty.
Bart appeared to have a new infection (a complication that occurs more often), and this time the attack came in a weakened body. The damage was tremendous, he could no longer breathe on his own. Those were grueling days. Days turned into weeks, in which we all hoped for a miracle. However, despite the best efforts of the medical team, the situation did not change and we were advised to “stop the treatment.” At the beginning of February we had to let go of Bart – a super proud father of our twins and my dearest buddy.
I am honored to assist Jur in his ambition to enable more scientific research for both Meningitis and Encephalitis. I sincerely hope that you support the ItsME Foundation so that future patients do not have to suffer the same fate as Bart.
Worldwide, nearly 10 million people develop Meningitis or Encephalitis (inflammation of the brain) every year. A large number of them die or develop permanent residual symptoms. There are all kinds of studies that need funding, varying from small to large. Lack of funding really seems to be the limiting factor right now. The comment is often that Meningitis and/or Encephalitis is too rare. That is why ItsME Foundation, as an independent foundation, supports groundbreaking research to improve the treatment of Meningitis and Encephalitis. ItsME is an initiative of Jur Deitmers.
Purpose of this fund
The foundation raises money to enable scientific research in the fight against Meningitis and Encephalitis. To increase the chance of a cure this is badly needed. The aim is to provide leading researchers conducting research on Meningitis and Encephalitis with resources that will enable them to conduct this research around the world. For this reason a Scientific Advisory Council has been formed with leading medical specialists in this field from home and abroad, in which the most important disciplines are represented: neurology, virology, molecular microbiology and clinical pharmacology. The fight for the cure of Meningitis and Encephalitis is of course not possible without the help of donors, sponsors, volunteers and ambassadors. The foundation therefore wants to collect as much money as possible through sponsorship campaigns and donations.
In addition to the Executive Board, the foundation has a Supervisory Board and a Scientific Advisory Council. The members of which receive no compensation for the performance of their duties, as laid down in the articles of association (other than out-of-pocket costs).
Harbor-UCLA Medical Center
(San Diego, Californië)
Good Samaritan Hospital
Harbor-UCLA Medical Center
(San Diego, Californië)
Good Samaritan Hospital
"Autoimmune Encephalitis is a group of diseases discovered only recently and the numbers of patients are increasing rapidly. Early immune therapy is of utmost importance to make a full recovery possible. The first goal is to fully delineate the disease spectrum and increase awareness to recognize all patients as early as possible in their disease. The second aim is to understand the mechanisms underlying autoimmune encephalitis to optimize treatments by targeting the relevant mechanisms specifically.”
"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!”