#LGDAwarenessDay Event in the Netherlands
On May 26, 2017, the Van der Velden family hosted their first #LGDAwarenessDay at their home in Dordrecht, the Netherlands; fifteen-year-old Ella van der Velden has lymphangiomatosis. To raise awareness for this disease and Gorham-Stout disease (GSD), the family invited people by social media, email and the local newspaper to visit from 1-6pm.
The family spoke with visitors at a self-made patient stand with photos, compact pieces of information, empty medicine packages and brochures. Ella’s beads-of-courage necklace impressed a lot of people. Coffee, tea and lemonade were offered for free and homemade cookies and cake and handcrafted goodies were sold at a small price. The backyard was filled with activities, such as untangle the spaghetti, get a picture with a skeleton and play shuffleboard.
A total of 80 people attended the event and even though it was only to raise awareness, they raised €1,000 for the LGDA. Two other patients, Sete and Lazlo, visited with their families as well.
Ella’s mom Ange is willing to help others to prepare for next year, so don’t hesitate to contact her at email@example.com.