Raising awareness & GSD patient treatment support

Hi!

My name is Ludvig and my sisters’s name is Sarah. We are both running a 250km ultramarathon in the Namibia desert and fundraising for a rare disease called Glycogen Storage Disease (GSD) and is a rare genetic disorder that affects the body’s ability to process and store simple carbohydrates, such as glucose.

Our nephew Casper carries this currently incurable disease and there has been a few close calls but we are very fortunate to still have Casper with us.

We will challenge ourselves to the limit in this race. Casper and the other GSD patients have a different challenge, which is a lifelong one that can cost their lives. 

New medications, better technology for continuous blood sugar monitoring, and improved treatments regimes are emerging resulting in a need for an updated of current guidelines. The SAGSD arranges conferences were all stakeholders meet for networking and discussions regarding the recent involvements. This unique format where patients and leading healthcare providers meet and together work towards a common goal - a better treatment for GSD patients. This is important since rare diseases do occur not get as much attention as many other diseases which is why your donation - large or small - will make a huge difference

Your donation will support the Scandinavian Association for GSD and aid not only Casper but all the children and adults in Scandinavia that carry this rare disease. 

With warmest regards,

Sarah & Ludvig 

Photo Credit RacingThePlanet - and for these photos @Thiago DIz