We are at a beautiful place in Italy with Abris this week. During the day while I get to see how company that makes our corset and wheelchair operates, he is having a lot of fun being around animals and the country side. I hope our plan works out and we can present these opportunities to the rest of the kids with SMA at home.
This time last year in Belgium…a lot has happened since then but this picture still represents the love and connection that leads us through the days – the two of us against the world.
Yesterday Abris’ Godmother and I were talking. We were talking about how ignorant people are to how lucky they are. In general. We complain a lot about being tired, having a lot of work to do, not having anything good to put on, not liking something about ourselves or just being bored. She said at times like these she thinks of Abris. How her problems are so small compared to what this little man is going through. And that made me think. It is true that we “heathy” people can’t even comprehend with the fact that things we take for granted requires hard work and […]
A year ago today Abris received his first Spinraza shot in Belgium. We than everyone that has helped us get to where we are and continues to supports us!
Good morning! Don’t forget to come to the Big Fighters Team’s sports day charity event this Sunday at Ors Vezer ter. The benefits go to the SMA Hungary Foundation. Come join us!
Today we received 151.875HUF from Balassagyarmat. Huge thank you to Kovesdi Erika for holding this all together, thanks for the support to the guests of Corleone Pizzeria and Svejk Restaurant and the costumers of KÉK ABC. Thank you to the managers of KÉK ABC for providing a space for people to donate and to the people working for the local Erst Bank for their kindness!
The Ministry of Human Resources has published a new directive on SMA. I am very proud that the SMA Hungary Foundation and myself personally were able to contribute to the process to help put together an up-to-date material. Based on this, in the future- hopefully – Hungarian SMA patients will receive a more competent and all around better care. In the meantime with a member of the foundation we are working on a prospectus for patients that will plainly and briefly contain the key information on the disease.
Dear Followers! So to avoid any misunderstanding for the future we’d like to ask all of you that if you wish to support Abris, please do so at any official BJABRIS Foundation charity event or directly through the foundations bank account. This is the only way we can guarantee that you donation will reach the destination you intended. To collect any other donations the signature of the foundations president is required and we can only accept money through our official donation boxes that we place at a certain location. Thank you for the support you have given us! Have a nice weekend!
Some great news just before the weekend! Starting from 2019, the BJAbris Foundation will be able to accept donations as the 1% of your annual taxes. We are asking you that, if you can, please think of us at your next tax filing. Don’t leave that space empty, take charge in where your 1% goes and help Abris on his journey! We are grateful for the support you have given us so far and we are counting on you!
Hello everyone! We received another noble pledge to Abris. During the weekend Team Mix successfully ran around the Balafon. They ran 221 km under 23:44 and collected 245.000 HUF. A big thank you to: Andrea Kiss-Pomozi, the people of Team Mix and all their friends that supported this event with their kind donations!