“FAST Poland is important for the Polish community because it reminds us that the cure for Angelman syndrome is not just a dream or a future available only for the few, but a real thing, that is going to be available for the whole world very soon.” – Hanna Dianow
FAST is honored to announce the start of a new global affiliate, FAST Poland. Karolina Pospieszyńska, mother of Tymek, who lives with Angelman syndrome, will serve as president. Karolina is a neonatologist who works with premature babies, and she is also a specialist in Alternative and Augmentative Communication (AAC).
She is joined by three other board members:
Hanna Dianow – a certified dietitian and experienced in ketogenic diet, who will handle social media, translations, and graphics for FAST Poland
Joanna (Asia) Węgrzyn – an architect who works with adapting public spaces for people with disabilities. She will be responsible for educating and spreading awareness of AS to the community.
Bogumiła Bibel – a costume designer with a master’s of art who will be responsible for supporting families and building a strong community in Poland.
These incredible mothers have already done so much for their Polish community, and we are excited for them to take on a bigger role to help advance a promising therapeutic for Angelman syndrome.
In the last year, this group has done an exceptional job of connecting with over 200 caregivers of individuals living with Angelman syndrome, conducted educational lectures for medical teams, and energized the Polish community, who are ready to engage with the FAST mission.
They are also going above and beyond as they actively have been supporting Angelman syndrome families in Ukraine during this turbulent time.
As this group continues to grow and professionalize, their goals are to spread knowledge to families and medical professionals about potential treatments for Angelman syndrome and the current clinical trials within the AS community.
“When you receive the AS diagnosis of your beloved one, you feel unbearable pain tearing your body. Each of us has experienced it. In this moment you need hope and to find a strong, supportive community. You also need knowledge to become the best advocate for your child. FAST gives it to you. This community is not giving up and still has a big dream. FAST Poland will put effort into improving the lives of all individuals with AS living in our country. We will do everything we can to lead our AS community to the day when a meaningful treatment is available for individuals of all ages and with all genotypes. We all share one great dream — to cure AS — and we are going to achieve it.” – Karolina Pospieszyńska