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rmined to fight for their kids instead. In some cases, these struggles even resulted in a miracle cure. That was how the idea for the Yash Gandhi Foundation first came about. "With the clock against us, we knew that any work we did was unlikely to benefit Yash, but to us, it didn't matter," Ash and Sonal Gandhi write, on the Yash Gandhi Foundation website. "What was most important was that we could make a difference and prevent another family from going through what we were at the time."  

[caption id="attachment_25140" align="aligncenter" width="1620"] The founders of the Yash Gandhi Foundation, Kavi Gandhi with his family. Photo: Twitter[/caption]

Handing over the reins

Today, the Foundation is run by their second son, Kavi Gandhi, now a student at Davidson College. In three years, they raised $460,000 to aid I-Cell research, to prevent the disease that claimed his brother's life from taking another. I-cell disease is caused by a genetic mutation and is a rare, inherited metabolic disorder "characterised by coarse facial features, skeletal abnormalities and mental retardation," according to the National Organization for Rare Disorders. Children with I-cell disease show delayed development of gross and fine motor skills, hearing loss, lack of muscle tone and growth delays.  

The Gandhis ran their foundation, the only one in the world for I-Cell, for 15 years. In 2013, they even climbed Mount Kilimanjaro to raise money for their cause. Three years later, however, they believed the time had come to close the foundation. Their 13-year-old son, Kavi, was not happy to hear the news. After giving it a few days of thought, he announced to his parents that he was going to revive the foundation and run it himself, in memory of his brother. 

Growing up with Yash

Only two years younger than Yash Gandhi, the family's trauma impacted Kavi too. He recalls a slew of hospital trips, and watching his brother hooked up to oxygen tanks and walkers. "We were really close like a lot of siblings are at that age," Kavi said. "A lot of my memories are from playing with him and spending time together. Those six years, I've definitely cherished and still retained a lot of those memories."  

When Yash passed away in 2009, the family created the Yash Gandhi Foundation. "Losing my sibling was probably one of the most formative experiences for me... the foundation is a way to transform the grief I felt with my brother into really honouring his memory and preserving that," Kavi remarked.   

[caption id="attachment_25141" align="aligncenter" width="780"] Kavi Gandhi was named the 2018 Global Genes RARE Champion of Hope for Teen Advocacy[/caption]

At the frontier of I-Cell disease research

Since he took over the foundation in 2006, Kavi has worked to connect with other families who have been impacted by I-Cell and has raised nearly half a million dollars towards ML II research. In 2020, Kavi interned at the Greenwood Genetic Center to study the disease in human and zebrafish cells. The young Global Indian is a 2021 John M Belk Scholar at Davidson College, where he is doing his undergraduate degree in Public Health, with a Minor in Hispanic studies. He's also a member of the university's jazz ensemble.   

In 2018, Global Genes named Gandhi the 2018 Global Genes RARE Champion of Hope for Teen Advocacy. Every year since 2012, the Yash Gandhi Foundation has issued research grants - in 2020, a smiling Kavi, standing with his parents, announced a $130,000 grant, their largest to date, to Dr Richard Street at the Greenwood Genetic Centre and Dr Stuart Kornfield of Washington University. 

, who moved to Dubai after his class X to join his mother. “She was already working in Dubai at the time and I decided to pursue my A levels there.”

[caption id="attachment_31955" align="aligncenter" width="505"] Jash Kalyani with his family at his graduation.[/caption]

By age 17 Jash moved to Canada to pursue his graduation from Huron University College where he studied political science in years 1 and 2. “I’d say Canada shaped my adulthood while India shaped my childhood. Canada is where I got my driver’s licence, got my first car and many other firsts,” he says, adding, “I got a job on my first day of college as a line cook in the university cafeteria. I wanted to build work into my schedule from day 1 and not after I graduate.”

During his time at Huron Jash also founded the Huron Indian Cultural Association (HICA) in 2018. The Association continues to thrive today and is a means for students to celebrate and share Indian culture with the Huron community. Over the last five years, the association has grown to become one of the largest student clubs on campus and at roadshows is the first to be showcased by the university. “I wanted to build a sense of community on campus and that’s how the club came about. Huron is a traditionally Anglican school and with HICA we celebrate Diwali in the chapel and Holi on the campus. The aim is to help students find a community outside of home and has now become one of the first things an Indian student coming here looks for.”

[caption id="attachment_31957" align="aligncenter" width="507"] Jash Kalyani during his city council work[/caption]

In the meanwhile, Jash also began working as a community connector with the municipal committee for City of London. “Here I worked with young and marginalised people. It involved a lot of grassroot work and over the course of three years I’d spoken with as many as 1,500 people,” says Jash. By the time he got to year 3 Jash began to get more involved in the aspects of equity, diversity and inclusion (EDI). It was also around the time the George Floyd incident occurred. “I was able to hone into EDI around this time and turned my focus towards it. For the first time, I also realised what it really meant to be a South Asian in Canada.”

The youngster also faced racism and used that as a learning experience to pivot his work. “I was sitting at a cafe and eating when a white guy called the cops on me for not wearing a mask. There were plenty of others there without a mask because we were all eating. But he targeted me as a ‘brown person’,” says Jash, adding, “It was scarring.”

The incident prompted Jash to speak to his university about what it was doing to make people feel safer and if it was systemically addressing racism. “That led to me doing an internal review for the school and a case study on Huron in which I got students to participate and suggest strategies.”

[caption id="attachment_31958" align="aligncenter" width="512"] Jash Kalyani at his graduation.[/caption]

As he moved to Ivey Business School, Jash wanted to continue his work in EDI and be a change agent. “I wanted to use educational platforms to talk about EDI and tied up with Ivey to build something into their curriculum. That’s how I ended up publishing an EDI onboarding module for the school with other students. The idea was to make EDI part of the student experience,” he says. He went on to intern with the Royal Bank of Canada, and was eventually hired by them.

Jash Wins Ontario Remembrance Award

In recognition of his contributions Jash was awarded the Ontario Remembrance Scholarship by the Ministry of Colleges and Universities and Western University in 2021. Jash was one of the four students to receive the award which was instituted in the memory of the four Iranian students who lost their lives on board Flight 752.

“Over the years I find myself becoming more interested in pedagogy and how EDI can be built into the curriculum. To this end, I have published two other case studies and also worked with the City of London on what it can do from a civic engagement perspective for people with marginalised identities,” he says. The school also funded him to go to Kenya and teach an entrepreneurship elective at MOI university.

[caption id="attachment_31956" align="aligncenter" width="501"] Jash Kalyani in Kenya.[/caption]

When he graduated business school in 2022, Jash took up his first job with Mondelez which proved to be a great learning experience. He later took up a role as senior analyst with RBC where he works in product management and credit card strategy. “That apart I’m also involved with several non-profits. I continue to publish case studies for the school and am currently designing a digital capstone experience with insendi, a British Educational Consulting Company, meant for students at Ivey for next year,” says the youngster. “I’m also working for a boutique consulting company that works in the EDI space and am going to flying school to become a recreational pilot,” he smiles.

Follow Jash on LinkedIn and Twitter.