We were very pleased to attend this conference in Rome. We = my daughters Dorenda (18 years old) and Hannah (17 years old) both Sialidosis type 1, accompanied by Marinus-Jan (father) and myself, Ciska (mother).
When we left The Netherlands for his conference we didn’t know what to expect This was the first time we attended the conference.
The girls both had a lot of questions for the investigator/specialist and they were especially very keen on meeting Dr d’Azzo to hear what is going on in her lab. I can truly say that it was confronting and emotional to attend the conference,but it also brought us insight in how many people are working so very hard every day, to make things better for children/adults with a glycoproteinoses storage diseases.
It was such an unique opportunity to meet specialists, investigators and families at one conference.
The first night was a special night. After we had a warm welcome from Jackie James and Jenny Noble we had dinner with the families, specialists and investigators.
We met Dr. d’ Azzo, and she introduced us to Dr. Camillo Toro from the USA, who knows a lot about Sialidosis patients and what helps with the day-to-day care.
As parents we attended parts of the scientific program as well. In the meantime our daughters could rest in the comfortable family room. Afterwards we had the chance to meet our own specialist from the Netherlands and could have lunch with her while talking about the scientific parts. She got in touch with Dr. Camilo Toro as well and they will keep in touch and he will get in touch with the girls neurologist from the Netherlands.
On Friday night we also had the award dinner with live music and we could relax and getting to know the other families better.
Saturday morning was our family morning with the specialists and families affected by Sialidosis. We met a few other families, it was good but also hard and emotional to share our stories and made the decision to stay in contact.
Thank you ISMRD for everything you organized and also thank you sponsors.
We went home with more hope in our hearts and knowing we don’t have to fight this battle alone.
Hope to meet you all again.
Dorenda and Hannah Westerink