Chairman
Ramakrishna Prasad Muppa
I am Prasad, Research scientist in chemistry by profession and founder chairman of Yasho’s Leukodystrophy Foundation. I am father of two young boys and among them Yashovardhan (Yasho) is elder son. He is 11 years old now and has been suffering with a rare genetic disease called HBSL. HBSL is one type of brain white matter disorder. Yasho has been physically weak since his birth and limited to wheel chair otherwise a very social and happy boy. Consequently we parents have to give enormous energy to face these special circumstances despite big help from our family and friends, liberal aid from local government, specialized doctors, therapists and school teachers. Hence there is a great need to develop easier screening (prenatal tests) methods and standard treatments for these rare genetic diseases.
With inspirational work done by Mr Damiani’s family (Mission Massimo foundation) we conceived an idea to start a foundation to help the research related to white matter disorders. Our personal experience taught us that the families with the children who are suffering with white matter disorders need lot of support. Our foundation will work in this direction to support not only research activities but also the affected children and families by these rare diseases.
Vice President
Erwin Somers
In my 44 years of life I came in contact with many people, with either a physical or a mental disability
(or both). These contacts were often short and showed a minimal impact on me.
When Yasho’s family became my neighbors in 2015, I started to closely observe the total impact of
disabilities in the daily life of a disabled person and his/her family.
In my daily work I have learned not to think in problems, but in solutions. I learned not to fix caused
situation but to take away the cause. With Yasho living in the house next door, I’m seeing the
problem and situation at close hand. I am challenged to find solutions that can help Yasho. My
knowledge field is in IT and not medical, however that doesn’t stop me to contribute in different
ways.
Many foundations focus on research and medication. What struck me with Yasho’s foundation is the
fact they don’t only make effort for the disabled person but also the family impacted by the
disability. What impact does the disability have on the family, the parents, the brothers or sisters?
What solutions can be found to make their lives easier, or give them tools to help the family member
better? A happy person starts with a happy surrounding.
Treasurer
Henri Spijkerman
I am Henri Spijkerman 48 years old and treasurer of the
foundation. My greatest passion is in sport and exercises. As a board member of the foundation I
want to devote myself to children suffering from this serious disease in which movement is very
limited.
I met Prasad, father of Yasho eight years ago, a good colleague and then his son Yasho and seen
how much influence a son with this serious illness on the entire family. I myself have a son of 10
years with hobbies soccer and judo. Together with him I regularly play soccer. For Prasad and his
son this is different. The daily care is of a very different order. Then he asked me to serve, I have
said a resounding yes to the board. I would like as a board member of the foundation to make my
contribution to children who have this disease and of course to support their parents. Furthermore,
we want to support our foundation research to prevent disease or cure.
Secretary
Deepti Tonpae Umesh
I am Deepti Tonpae Umesh – a mother, a daughter, a wife, hobby cook, reader, listener, IT consultant – most importantly, passionate about life and a believer !! in humanity, I see my God and in people, I see love.
I have known Prasad , his wife – whom I fondly call Lakshmi akka (akka means sister) and Yasho since the day I came to Netherlands – November 2008.
Years of friendship with them has made us more of a family. I have always admired Prasad and Lakshmi akka for their optimism and their efforts in making Yasho feel at home – from getting him ready for the day ahead to reading a bedtime story. They are amazing parents. Such effortless love that I forget sometimes how hard they work – physically and emotionally through every treatment , through every hurdle – sometimes through every minute of the day !
With this foundation, I hope to contribute to that world of unknown diseases towards the world where Yasho can run, play and enjoy life as he deserves
