July 7, 2022
Netherlands – SAS shares exciting news
During WPIW we organised a live broadcast, and we hired-out a video studio at the Radboud Hospital in Nijmegen.
The content of this online meeting was dominated by the theme ‘Life can be saved’. Several specialists shared presentations: Dr. Koen van Aerde spoke about a new program to help children transitioning to adult care; Dr. Joris van Montfrans and Dr. Emmeline Buddingh discussed COVID in children and the new iPad study; Drs. Judith Potjewijd spoke to us about PID and diarrhea and celiac disease. We closed the programme with Merlijn van Hasselt from Prothya (former Sanquin Plasma Products) who informed us about the production of plasma, the shortage of immunoglobulins and the importance of blood/plasma donors. It was a special experience to present this day live from the studio to our members, who assessed it very positively.
We also launched our 4 WPIW videos and 3 special podcasts. The themes of the videos are: ‘Awareness of living with PID’, ‘PID treatment’ and ‘The importance of working together’. In the podcasts, three young people gave a glimpse into their lives with PID regarding relationships, school/study and traveling. Podcast’s title on Spotify (only in Dutch): ‘Je bent jong en je hebt wat’.
During the WPIW we also launched our new logo. After more than 35 years of SAS, we thought it was time for a new look and feel. The “Y” symbolises an antibody, and the colours show the different variations in PIDs.
May 13-15 our youth members organised our annual Youth Weekend. Day to day life and its challenges were discussed, as well as chocolates were made and an escape room challenge was accepted.
International Blood donor Day
June 14th was International Blood Donor Day. In order to thank donors, but also create awareness and hopefully increase the number of donors, we launched a Strava Art event for the month of June. Together with Sanquin (Dutch Bloodbank) we received t-shirts and flyers. Our members could enlist and participate in creating Strava Art. By using the app, sport activities can be logged and shared. We challenged our members to create art whilst walking, running, or biking by for example spelling ‘blood donor’, drawing a zebra etc.
As our members did not feel comfortable for a live event during the WPIW, we decided to seize the moment on June 18th. We organised our annual SAS-family day at Boerderij de Boerinn. We were blessed with many inspirational speakers to be able to arrange 3 rounds of 7 workshops where the speakers touched the following subjects:
- Prof. J. van Dissel: The future of Covid
- Dr. V Dalm: Autoimmunity and auto-inflammation with a PID
- Prof. M van der Burg: Genetic testing in with newborn screening; what is your opinion?
- Bibian/Janine: Live Podcasts: The impact of a PID on youngsters with study, travel & relationships
- Prof. A. Lankester: Stem cell transplantation. For whom and when?
- M. Metaal: From blood donor to immunoglobulins
- Sascha & Sieze: Personal experiences about long-term traveling with a PID
- Dr. J. van Montfrans & Dr. S. Boland: How to prevent lung damage for CVID and other PID patients
We also launched the SAS’s very own and first comic book: Pleun & Vic: superheroes.
A comic book sharing the story of best friends Pleun & Vic where Pleun finds out she has a PID and discovers by means of VR glasses how her immune system does not work correctly and what is needed for Pleun to stay healthy. Of course, all the time her best friend Vic is there to support her.
It was a day for the whole family and so we also organised fun activities for all family members, but specifically for the younger children, such as polder sports, a colouring competition, canoes and clog golf. The weather was beautiful so there was a lot of (water) fun.