Hi! This is Zia (Iftikhar Md Zia) from Chennai/ India.

My Son Zoyeb Mohamed Zia has Ataxia and is currently working as an Assistant Professor of Zoology, having completed his M.Phil. and he was to start his PhD last year. The lockdown delayed the start, and he is hopefully signing up for his PhD this year.

Being a normal playful guy till he was about 14 – 15 years when his life and his outlook towards life changed when he was diagnosed with Ataxia while he was in his High School. Ataxia being a rare Neurological Disorder caused disruption in not just his life, but it also made me change focus.

The diagnosis brought us to a full stop.

A year of running around, visiting doctors, hospitals and labs drained both of us. Rare. No cure. Progressive. Tests, tests and more tests. These were the only statements we received at that point when there was not much awareness about rare conditions.

We chased everything and everyone – looking for a cure. All available tests were done – even though the doctors kept saying that there is no medicine for any type of ataxia. We wanted to find out and connect with groups or companies working on Research or Trials.

Zoyeb needed support to walk to school and with his main board exams coming up, he was tired with all the visits and negativity surrounding him. The acceptance, and the willingness to face the difficulties, helped him to go ahead in pursuit of his education and career.

His journey through school and college, prompted us to start volunteering in the rare diseases and disorders segment and in the PwD segments.

Zoyeb is a motivational speaker now. He speaks on different platforms at schools, colleges, and corporate offices, sharing information about rare diseases and disorders. He also highlights the need for inclusion. Though he volunteers in all segments, he is more connected with Ataxia groups, and is a Co-Founder of ORND (Organization for Rare Neuro Degenerative Disorders).

He has made progress in different areas – has his set of goals and priorities in mind and is focussing his attention on the following currently:

On the Education Front – the start of his PhD was delayed due to lockdown. He is signing up for his PhD this year, and is looking forward to connecting with Foundations or Groups which can help him through his PhD

On the Medical Front – he is currently searching for any research going on ataxia with oculomotor Apraxia Type II

On the Social Front – he plans to get more active in both segments – rare diseases and inclusivity.

He is very keen on motivating students – especially those facing challenges similar to his.

We have organised awareness runs, events and we have even taken part in some ourselves. We work towards connecting people and families with the right support or help groups. We are always encouraging and motivating others to speak, network and get involved.