(SEE DOCUMENT AT THE BOTTOM OF THE PAGE)
Dear friend,
Weeks before the WHO officially declared the pandemic, we already shared info on our social networks about COVID-19, specifically on 23 January 2020. Unfortunately, during this past year 2021 the pandemic has continued and has not stopped. However, this has not prevented the Dravet Syndrome Foundation Spain from having another really active year.
From the scientific area, we have awarded different grants to numerous research teams, including CIMA University of Navarra, University of Melbourne, Genetics Unit of La Fe Hospital, University of Tel Aviv, Sant Pau Hospital in Barcelona or the National Centre for Scientific Research in France. In addition, we have also initiated a wide range of our own research projects, including the publication of an updated guideline that culminates with new treatment algorithm for Dravet syndrome through a European consensus involving 29 European clinical experts in Dravet syndrome.
We have not lagged behind in the social area. Through the Protect Yourself Project, we have equipped our families with more than 50,000 FFP2 masks. On the one hand, to ensure maximum protection of Dravet syndrome patients and caregivers, but also to help the already impacted family economies. We have also equipped our families with non-contact clinical thermometers, as part of the Always Alert Project. Another relevant social project we have launched in 2021 is the Little Wish Programme, through which we are making it possible for the children of the Dravet Syndrome Foundation Spain to make their dreams come true. Ultimately, the joy and excitement that the fulfilment of a wish brings to our children gives them the strength to continue in their struggle and, for parents, the fact of seeing their child happy is the best boost in the battle. In addition, other initiatives such as our Solidarity Fund, the Psychosocial Care Programme for Siblings of Patients with Dravet Syndrome or the Whole Genome Sequencing Programme are still underway, forming part of this battery of projects and initiatives that considerably improve the quality of life of patients and families with Dravet Syndrome.
And yet another year we have once again run many kilometres in solidarity with RetoDravet, the world’s largest team of sportsmen and women in solidarity. Breaking records, last June we managed to get more than 1,200 people to take their solidarity bib and go for a walk, run or practice their favourite sport, as part of the campaign to raise awareness of Dravet syndrome. We also managed to get more than 130 emblematic buildings and monuments all over Spain to light up in purple on 23 June, generating dozens and dozens of news items in the media.
In short, a very fruitful year in which we once again leave you with the drugs on development report for families from the Dravet Syndrome Foundation Spain, in which you can check all the advances in research.
The mask will cover our smile for the satisfaction of the job well done, but not the heart with which we do it.
For this new year 2022 we wish you happiness, prosperity, and health, lots of health.
