Today’s postcard comes from ReR-MedToday! ReR-MedToday! is a German based charity that serves to aid families battling rare childhood illnesses by raising funds and gaining medical information. The important objectives of this organization are headed by Remigiusz Eryk Raitza and have already made a difference in the lives of many people. Thanks Remi for sharing your work with us!
About ReR – MedToday!
What is ReR – MedToday!? ReR – MedToday! is a not-for-profit project initated in Germany. The objective of ReR – MedToday! is to suport families affected by pediatric cancer as well as infectious and rare diseases in children. Specifically, we provide patient education and medical information for researchers and medical students and practitioners.
ReR – MedToday! supports local families, disadvantaged adolescents and conducts online charity auctions with the friendly assistance of the registered association Schalke hilft!.
Remigiusz Eryk Raitza, founder and project manager, is currently a medical student. He uses his professional training to provide information to families in need. He also supports families affected by pediatric illnesses and connects them with important resources to help them find the right treatments or even just to cope with the problems and stress affect their daily lives as they deal with a sick child.
Most orphan diseases are genetic in origin. Many rare diseases appear early in life, and about 30 percent of children with rare diseases will die before reaching their fifth birthday. Knowledge exchange is most important in these cases to improve living conditions and to prolong life. This is one of Raitza‘s most important goals. Accordingly, collaborations are important when dealing with rare diseases! We provide support for local and international families, who can connect and share their stories to support and learn from each other. Therefore, we seek international collaborations to further help affected families connect with important resources.
Special Project of ReR – MedToday – Drake Current: Drake Current, a three-year with the Dravet syndrome, is one of ReR – MedToday!‘s special cases. Dravet syndrome is a rare childhood-onset epilepsy. Children and teenagers are the most vulnerable groups to this disorder. Normally we keep all data regarding the families we help confidential, but Drake’s parents felt it was important to bring attention to this little-known disorder and therefore were kind enough to give us permission to share this story. Drake’s story highlights the importance of acquiring knowledge and connecting with experts when dealing with rare diseases.
Everything changed for Drake‘s family in January 2009 when the nine-month-old infant suffered his first seizure. Eventually, Drake, who was born in April 2008, spent a full month in the hospital, coming home three days before his first birthday without a diagnosis. The family battled the seizures constantly for another 15 months. ReR – MedToday! advised the family and discussed his ailment with his dad. We forwarded anonymously the details of his case and his symptoms to physicians and specialists in Germany. During this time, Drake‘s development was clearly being affected. He was developmentally delayed about a year in receptive and expressive language as well as gross and fine motor skills, and he was not maturing.
ReR – MedToday! proposed a genetic test after his dad contacted us again. The results revealed that Drake has Dravet Syndrome, a rare, severe and malignant form of myoclonic epilepsy. Although Drake’s parents know that their beloved son will never outgrow this illness, the diagnosis finally allowed them to be able to deal with it.
In addition to aiding with the Dravet diagnosis, ReR – MedToday! recommended the 4 Paws For Ability program, for Drake, which provides specially trained dogs to help families cope with disabilities and illness. We raised funds to purchase a special dog named Sushi, which joined the family on December 10, 2010. Sushi is able to detect the onset of Drake’s seizures before they occur and alert his parents.
Drake’s story is just one example of the work we conduct at ReR – MedToday!
The basic lesson we must take away from our quality of life is that we must act responsibly towards ourselves and others. Anyone can help make the world a better place simply by providing faith, hope, a listening ear, security, and understanding!
Current Project: Currently we are building a skilled team that can ensure the proper answers to general and specific medical questions from all medical disciplines. We are expanding our internet presence by developing a bilingual web siteto reach wider audiences.
JIDC is one of the leading resources we may benefit from. I am grateful for this unique chance to spread the word about ReR – MedToday!,through the JIDC blog.
My work on the ReR – MedToday! web site as a scientific author will also focus on information about infectious diseases in developing countries to instruct national professionals and to teach patients or tourists. At ReR – MedToday! we strive for competence, knowledge to provide free online information resources.
Want to collaborate with ReR – MedToday!?: All science readers, scientific bloggers or scientists, are invited to post guest contributions in English or German at ReR – MedToday!. An example can be seen in our former collaboration with the internet radio station for handicapped people and their barrier-free friends „Radio4Handicaps“ (R4H).
About Remigiusz Eryk Raitza: Let me introduce myself to you. My name is Remigiusz Eryk Raitza.
I was born on 17 May 1978, in Kattowitz (Poland), raised in Hanover (Lower Saxony), and moved to the Ruhr district, the largest urban area in Germany, in North Rhine-Westphalia. During 2010, the Ruhr region was one of the European Capitals of Culture.
After my university-entrance diploma I worked as an orderly for about two years. Before I started studying I had completed military service as a medical corps soldier.
As a former soccer player of „FC Gelsenkirchen-Schalke 04 e. V.“, „Sportgemeinschaft 09 Wattenscheid e. V.“ and medical student, I want to give something back to the community. I developed the idea for my not-for-profit project during my medical studies in Giessen (Hesse) at the Justus Liebig University and founded ReR – MedToday! in 2007. ReR – MedToday! is located in Recklinghausen-Essel (in the Rhine-Ruhr metropolitan region). My charity is also dedicated to my former fellow student Geert Steffens, who left us tragically too soon.
Besides patient counselling without commitment, I also bring honorary complementary assistance and consulting in networking with my IT services R2Z (Ruhr area 2.0) to fundraisers, nonprofit organizations (NPO) and third parties. Data protection means trust so all information remains confidential unless otherwise agreed upon.
Since the year 2001 I have supported the global program for monitoring emerging diseases, ProMEDmail, of the International Society for Infectious diseases (ISID). ISID is committed to the control of infectious diseases around the world and to improving the care of patients with infectious diseases.
Contact ReR – MedToday: If you have any questions, please contact me by e-mail. Further informationcan also be found on our homepage, http://www.ReR-MedToday.de .
The latest research is our passion. Join the conversation!.
ReR – MedToday is a „thank you“ to everyone who is commited to helping others. Be an inspiration and a model likewise!
Remigiusz Eryk Raitza
ReR – MedToday!
Tel: 011-49 176 70862363
Fax: 011-49 2361 5822413