After the diagnosis Daniel has a complex of daily activities
3 times / week
2 times / week
1 time / week
1 time / month
Every 3-4 months we try go to intensive therapy programs in different rehabilitation centers, where every day he has 5-6 different sessions for two weeks.
... and indeed a lot of exercises at home
Our son will be healthy
Therapies can only partially maintain our child's development and improve the quality of his life. Angelman syndrome can't be cured yet, but gene therapy clinical trials are currently being conducted in order to treat the cause of Angelman Syndrome (non-functional UBE3A gene) and possibly cure this desease!
We believe that our son will become healthy!
We thought of how we could help Daniel even more and decided to start #MyAngelMan initiative, opening Instagram and Facebook accounts.
And having made this website
The main objective is to cure our baby!
Raising the awareness of Angelman syndrome
Angelman syndrome popularization in social networks and mass media.
To raise funds in order to support Angelman syndrome clinical trials, being conducted in Europe with the assistance of FAST FRANCE (Foundation Angelman Syndrome Therapeutics in France), part ok FAST USA, the organisation,which raises th
Angelman Syndrome Fund
We, together with our like-minded parents, established Angelman Syndrome Fund in Russia and want to help doctors and scientists to start clinical trials of the treatment in coming years
My husband and I are volunteers of FAST France Fund, and I (Daniel's mother) am a co-founder of Angelman Syndrome Fund in Russia. We are going to support the researchers for Angelman Syndrome treatment through cultural, music events, sports campaigns, donations. More details can be read in the collaboration section
I also created the bougie d'espoir project, where you can acquire my hand-made candles. All revenues from sales are directly going to support those funds. Special design eco-candles with the red wick togetehr with good thoughts sending to the Universe will fulfill all your wishes. You can check the initiative bougie d'espoir on Instagram: