Kishenathrao Harinathrao may be just an average Joe. Among his circle of friends and family, this third year law student is known to be passionate in championing the cause of people living with rare diseases. The World Health Organisation (WHO) defines rare diseases as diseases that affect a small percentage of the general population. In Malaysia, out of the 550,000 babies born every year, 16,500 have congenital abnormalities, and most of them suffer from rare diseases which are life-threatening without any cure.
Recently, Kishen received a scholarship award from the National Organization for Rare Disorders (NORD), based in the United States. The award enables him to participate in the NORD’s 2019 Rare Diseases and Orphan Products Breakthrough Summit held in Washington, DC. In fact, Kishen is the first-ever Malaysian to be awarded this scholarship. (Malaysia, represent!)
We managed to connect with Kishen before he left for the United States on his passion to raise awareness about rare diseases, his contributions and plans for the future.
1. Congratulations on the NORD’s scholarship award. How does it feel being the first and only Malaysian to ever secure a scholarship from NORD?
To be honest, I was quite nervous when I got the news that I was picked as the recipient of the NORD scholarship. In fact, I hesitated to accept the offer at first. After much consideration, I decided to go ahead out of commitment to this noble cause. My participation in this conference will benefit others as I will be able to pass on the knowledge to fellow members of the Rare Disease Student Club and the local community. Hopefully, with greater awareness we will be able to come up with new methods to help the rare disease community.
2. The NORD scholarship is awarded to individuals who contribute to raise awareness on rare diseases. Why rare diseases and how important is advocacy work in this area to you?
It all started with my first community service project. I got to know about the Make It Right Movement (MIRM) through my team leader, Ms. Hemassree. Being an active member, she invited MIRM’s Head of Community Development, Mr. Brian Lariche to give a talk on ways to carry out a community service project. My introduction to Mr. Siva, who is a rare disease patient’s father was inspiring as he is a parent of a child living with a rare disease called Pompe. Thanks to Mr.Siva, I gained much knowledge about rare diseases and the challenges faced by them and their families.
This sparked my interest in causes related to rare diseases and the Malaysia Lysosomal Diseases Association (MLDA). I had the opportunity to organise a walkathon event (“A Walk of Hope”) in aid of the Association and to spread awareness about the rare disease community in our country. The event was a success as we managed to raise funds and hosted over 120 participants for the walkathon. We donated all the funds to MLDA. It was a good experience. From then on, I pledged my full commitment to advocate and help the rare disease community.
3. In line with this year’s theme for the 2019 Summit, ‘The Time is Now’, how can we improve as a nation to make a positive change in the lives of those living with rare diseases?
We can start by reducing the cost of medication. This is because most medicines for rare diseases are often very expensive and patients are deprived of insurance policy coverage. Therefore, a lot of patients do not have the means to pay for medication. There is also an increasing need for awareness programmes about rare diseases as members of the public are still in the dark about rare diseases.
At the end of the day, everyone is welcomed to care, share and grow together!
4. What are other causes close to your heart?
I would be honoured to support the Down Syndrome society. Although I do not have much exposure to this community at the moment, I hope to be more involved in the near future.
5. Do you have any role models that you look up to?
Two public figures have been major inspirations – the late Mr. Lee Kuan Yew and Mr Karpal Singh. Given my interest in law and politics, I tend to relate to these two icons.
Other role models include Mr Raja Singham, Mr Brian and Mr Siva. All three of them have taught me the importance of being selfless and giving back to the society.
At this juncture, I would also like to thank my friends from MIRM as well as Hemassree, Kesavaraj and Ng Wei who have encouraged me to take up the scholarship.
Last but not least, I would also like to thank my parents, siblings, close family members and also my fellow friends who made me who I am today.
6. What are some of the projects that you have undertaken in the past to raise awareness on rare diseases/conditions to the younger generation or public at large?
Apart from the walkathon organised last year, we have also established the Rare Disease Student Club in college last July. We are currently in the midst of recruiting new members. Safe to say that we are on the right path, so far. We have also pledged to organise more fundraising events in the near future.
After my return from the United States, we are planning to organise a rare disease awareness forum. Thus far, things are going pretty well and we are pleased with the progress we have made.
7. Finally, what is next for Kishenath Rao?
I am focused on fulfilling my childhood ambition of becoming a lawyer. Aside from that, I have an interest to venture into politics. I am determined to make this dream come true.
With the help of my friends, I am confident that we will be able to continue striving for the rare disease community both locally and globally.
We wish Kishen success in his future endeavours!
*Featured image sourced from Kishenathrao Harinathrao