Why I'm Cycling For Children With Cockayne Syndrome
Why I'm Cycling For Children With Cockayne Syndrome
An Interview with #Ride4Riaan Cyclist Winty Singh
by Riaan Research Initiative
Today, we had the pleasure of interviewing #Ride4Riaan cyclist Winty Singh on how he became involved with rare disease fundraising, and his advice for others interested in supporting the development of treatments for Cockayne Syndrome. Check out the full interview below, which has been edited for clarity and length, and also be sure to watch his recent appearance on Jus Punjabi (linked at the end of this post).
1. What is #Ride4Riaan?
#Ride4Riaan is my fundraising charity ride for Riaan Research Initiative. I've been cycling to raise funds for charities since I started cycling in 2014. It has been my way to do some social good with all of the effort I'm putting into training and competing in these events. All of my charity rides have been supported by larger organizations and charities. However, last year, when I learned of Riaan's diagnosis with Cockayne Syndrome and that there were really no resources or research advocacy organizations to assist kids like him, I wanted to try to help. So, I started #Ride4Riaan last year to raise funds and awareness of rare disease and Cockayne Syndrome. In that event, I rode the Moab Century Tour last September. That was a two-day ride based on Moab, Utah that covered a total of 165 miles and about 5,000 feet of climbing each day. It was one of the hardest rides I'd ever attempted at the time. I survived it, and we raised over $5,000 and got some awareness out there.
2. How did you get involved in fundraising for rare disease, and specifically for Cockayne Syndrome?
It really started with my friendship with Riaan's mom, Jo. I have known Jo for almost 10 years. We both were involved in Sikh civil rights advocacy and have been friends ever since. When she shared about Riaan's diagnosis and the dire straits that Cockayne Syndrome entailed, I really wanted to find some way to help.
When I see photos and videos of Riaan, it's hard to not want to do something. There is something touching about these young children going through what they are but still exuding their innocence and light. I just wanted to help these kids in their fight. These kids deserve it.
Jo has been very inspiring herself. While the work she's been doing to find a cure for treatment for Cockayne Syndrome was not in her wheelhouse, she has accomplished a great deal in just a short time. The strides she's made and the passion that drives her really compelled me to support her, especially because there is no fallback plan -- there was no other organization that exclusively advanced research for Cockayne Syndrome like there are for other diseases.
3. What do you want people to know about rare disease and rare disease research?
We call it "rare disease" but the number of people with these diseases is huge -- it's in the tens of millions. Yet, we haven't supported people who are fighting these diseases like we have others. They don't have multi-million dollar nonprofits supporting them and rare diseases don't get talked about because there's not a lot of research going on about them. Still, as Jo has described, it's not about finding a treatment, it's about funding a treatment. If we can bring attention to these diseases, make people take notice and help fund the research, we can -- inevitably, we will -- find treatments and cures. And, if we can do this for one rare disease, who knows how that might help patients of other diseases.
4. What is your advice to other people who want to get involved in fundraising for Riaan Research Initiative, and Cockayne Syndrome research more generally?
The number one thing I can advise is not to be shy. Fundraising is uncomfortable -- it's not easy to ask people for money (even if it's not for you). But, you never know what impact you can have if you don't ask. It's a low risk, high reward potential. People you know -- and many you don't know -- actually want to help. You are providing them a way to do it. Also, Jo is great to work with and is really supportive. She is very collaborative and motivated, and she'll do all she can to help.
5. Are you nervous about your upcoming ride? Tell us about your route!
I have to admit that I'm a little nervous! This route is a 75-mile course from Vancouver to Whistler, BC. I grew up in Vancouver so it'll be an emotional trip to my hometown. But, the course itself will be a new challenge for me because it'll be the most climbing I've ever done, over 7,500 ft., with most of that climbing happening in the last 35 miles. Because it's one way, it's just up, up, and up with not a lot of descending to give my legs a break.
On the plus side, there will apparently be 7,000 participants in this race, so I won't be suffering out there alone! Plus, I know I'll be cheered on by my family, friends and everyone who supported me with a donation, and I’ll be riding with my Riaan Research Initiative jersey on! And, having all the support from everyone is what will keep me pushing through until the finish line.
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Don’t forget to check out Winty’s television interview with Jus Punjabi!
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To support Winty’s ride and help him cross the finish line, please donate at give.riaanresearch.org/ride4riaan!