DIPG Registry's first major scientific article is now published
In January the SIOPE DIPG Registry in Europe was published in the Journal of Neuro-Oncology. The SIOPE DIPG Network form an international network and research infrastructure for DIPG. Through collaboration we can speed up the pace of research and make larger strides towards developing new therapies. You can read their article here: http://link.springer.com/article/10.1007%2Fs11060-016-2363-yRead the whole article »
tijn's action is also raising awareness for our foundation
A terminally ill Dutch six-year-old, who hoped to raise a few hundred euros for other sick children by daring people to paint their nails in garish colours, had raised more than 1.27 million euros (S$1.92 million) by Friday (Dec 23).
Tijn Kolsteren, who was diagnosed with brain stem cancer (DIPG) in May, launched the appeal only two days ago but it has quickly fired the imagination of the Dutch public who had donated more than 1.27 million euros at the last count.
“Paint your nails, make a donation and then challenge three of your friends to do the same,” dares the donation page, which invites participants to share their pictures on social media using the hashtag #lakaan (meaning “the polish is on”).
“Most poor children diagnosed with pneumonia don’t live until the age of five,” said the young boy on the site. “That’s why we have to put up a fight.”
Celebrities, politicians, presenters and actors have been among thousands of people who have posted pictures of their painted nails online.Read the whole article »
Run4Semmy - join us!
On October 18 the eight Run4Semmy event will take place. As always, the run is part of the 8-km distance of the TCS Amsterdam Marathon. But if you want to take it to the next level, feel free to participate in the half or full marathon for Semmy. 😉
Your sponsors can support you per kilometer, a fixed amount for the full distance or just donate a random amount, irrespective of your achievement. All gifts are much welcomed. If you have participated before, please be aware that it might harder to find sponsors than last time. We assume everyone will do the best they can in this respect.
If this is your first time in Run4Semmy, make sure your fundraising target is at least € 250,-, on top of the € 25.00 registration fee. More info & registration form on the webpage: http://www.pontineglioma.com/run4semmy-2/Read the whole article »
Step4Semmy - join us!
Scooter on Sunday, 4 October 2015 and go twenty times up the Cauberg (South Limburg) in support of Stichting Semmy.
The Cauberg is to be scootered up using professional foot bikes or push scooters. The distance to the summit of the Cauberg is 1450 meters, giving a total distance of 58 km.Read the whole article »
Why Stichting Semmy?
Every year about 125 children in the Netherlands are confronted with a brain tumor. Approximately 15% of brain tumors in children is a brainstem tumor (DIPG / pons glioma), about 18 cases per year. The survival rate of a brain tumor is in fact almost 0% after diagnosis with a life expectancy of 2 to 12 months. Stichting Semmy (Semmy Foundation) is funding the VUmc research VONK-SEMMY.Read the whole article »