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Global Indianstory Global Indian ExclusiveHis brother’s keeper: Yash Gandhi Foundation leads the way in I-Cell disease research
  • Global Indian Exclusive
  • Indians in USA

His brother’s keeper: Yash Gandhi Foundation leads the way in I-Cell disease research

Written by: Team GI Youth

(December 7, 2022) Yash Gandhi was eleven months old, the much-adored firstborn son of Ash and Sonal Gandhi, when he was diagnosed with a rare, terminal disease. He wouldn’t make it past the age of five, doctors said, and there was nothing anyone could do. Shattered, his parents scoured the internet for information and answers, finding none. Their search for solace led to the creation of the Yash Gandhi Foundation in 2001, which has, over the years, given out sizeable grants for I-Cell research and has reached hundreds of thousands of people across over a dozen countries. In 2016, their younger son, Kavi Gandhi, took over the foundation and has been running it since, determined to keep his brother’s memory alive. 

To fight another day

What they did find, however, was stories – hundreds of them, all similar to their own. The internet was full of devastated parents who, instead of allowing grief to debilitate them, were determined 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.”  

The founders of the Yash Gandhi Foundation, Kavi Gandhi with his family. Photo: Twitter

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.   

Kavi Gandhi | Yash Gandhi Foundation | Global Indian

Kavi Gandhi was named the 2018 Global Genes RARE Champion of Hope for Teen Advocacy

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. 

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  • Davidson College
  • Greenwood Genetic Centre
  • I-Cell disease
  • Washington University
  • Yash Gandhi Foundation

Published on 08, Dec 2022

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Shivam Shankar Singh: Behind the scenes of the great Indian political theatre

(April 29, 2022) In April 2011, anti-corruption activist Anna Hazare began his famous hunger strike at Jantar Mantar, New Delhi. The movement spread and a series of protests erupted across the country, with Time magazine naming it one of the Top 10 News Stories of 2011. Shivam Shankar Singh, who was setting off to the University of Michigan at the time, found the protests evoked a sense of urgency in him. So, when Prashant Kishor founded Citizens for Accountable Governance in 2013, data analyst Shivam dove headlong into a political career. Today, at the age of 29, he is not just a political consultant of repute, he is also the author of two books - How to Win an Indian Election (2019) and The Art of Conjuring Alternate Realities, which hit bookstores in 2021. In July, he will head off to Tsinghua University in Beijing's Forbidden City, as a Schwarzman Scholar for 2022.   Deep dive into politics In 2013, Prashant Kishor launched the Citizens for Accountable Governance (CAG, later IPAC), a "turning point in Indian politics", says Shivam, adding, "For the first time, there was room for professionals in the political space. Until that point, joining politics meant working your

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countable Governance (CAG, later IPAC), a "turning point in Indian politics", says Shivam, adding, "For the first time, there was room for professionals in the political space. Until that point, joining politics meant working your way up as a karyakarta." He seized the opportunity, volunteering with CAG's projects even though he was in the US at the time.

When he returned in 2015, his LAMP fellowship sent him right back into the heart of Delhi politics. "I knew I wanted to be in politics and the policy space, and it seemed like the best opportunity," he says. One of the most prestigious fellowships, LAMP fellows shadow a member of parliament for a year, starting from the monsoon session, till the end of the budget session. Assigned to the office of PD Rai, Lok Sabha MP from Sikkim, Shivam had an insider’s view, familiarising himself with grassroots politics in the north-east.

It was a defining experience and Shivam recalls working with the likes of Shashi Tharoor, Rajiv Pratap Rudy, Dinesh Trivedi and Meenakshi Lekhi. "We became familiar with their life stories, their rise as politicians," he explains.

The parliamentary questions expose

Preparing parliamentary questions was an important part of the job. Shivam was puzzled to discover that some MPs seem to have their questions selected more than others. Each member of parliament can submit up to 10 questions each day, out of which five are picked for answering on the floor of the house. Although this is decided in a ballot process, something seemed awry.

The Parliamentary Questions system was extremely flawed but very valuable in keeping the govt accountable.

It didn’t even require any house time as most questions got only written answers! Read this investigation we did on the system to understand it.https://t.co/xWQOIA1nup

— Shivam Shankar Singh (@ShivamShankarS) September 2, 2020

"Some MPs get most of their questions selected, while others get less than a third," Shivam explains. "There were three of us in Rai's office, two former LAMP fellows. We pulled the data and realised that the system had been completely rigged," he says.

 The expose went viral, receiving attention from the upper echelons of government and even resulting in a policy change. "The rigging happened across party lines but most of them were from Maharashtra," Shivam laughs. "Today, I'm on great terms with a lot of them but at that point, they were pretty angry with me!," he adds.

Rebranding Captain Amarinder Singh

When the LAMP fellowship ended in 2015, Shivam returned to Kishor's I-PAC the following year. "I had a base in data analytics by then," he says. His return was during the run-up to the 2017 Punjab legislative assembly election and leading the charge for the Congress was Amarinder Singh. The Congress had hired Prashant Kishor for the campaign, and Shivam was soon on ground in rural Punjab.

"I was involved with the rebranding of Amarinder Singh. He was seen back then as unapproachable, as royalty and not a man of the people," Shivam explains. The first change Kishor, Shivam and the team made was to bring back Singh's army title - Captain. "Being in the army comes with a certain connotation - the general perception is of a man of action, who stands by his countrymen," he remarks. A massive media campaign followed, along with Amarinder making an election promise to visit every constituency. "He had never actually done this before," Shivam adds. "He didn't make it to all but he went to many."

The campaign also used technology in a way that hadn’t been done before in a state election, although Narendra Modi had set a precedent during his prime ministerial campaign in 2014. "We wanted everyone to know that the Captain had been to their constituency."

Entry and exit from the saffron party

The IPAC stint lasted five months, after which Shivam officially joined the data analytics wing of the BJP. Again, his arrival was timely - just ahead of assembly elections in Manipur (2017) and Tripura (2018). His was assigned with formulating election strategies and targetting voter groups through social media.

In June 2018, Shivam made a rather public exit from the BJP's fold, with a post on social media titled, 'Why I am resigning from BJP'. It went viral. "By that time it had become obvious that the campaign was mostly about religious discourse. It was a very different type of political messaging from 2014, when economic development was the focus. I knew I had to leave," he adds.

By this time, Shivam already had a reputation as a data analyst and political expert. Now he found himself showered with media attention.

It had its appeal - "you're automatically seen as an achiever, just because you have been on television," he says. Even so, he found that fame for fame's sake just wasn't what he wanted from life. "If it doesn't align with what you're actually trying to do, then it's of no use. I'm sure there are different ways of looking at it but this is mine," he adds.

‘Booked’ by Penguin Random House

Later that year, Penguin Random House made him an offer. "Prashant Kishor had signed a book deal but never got around to actually writing it. Penguin was looking for someone to talk about what a political consultant does. So they reached out to me after the Tripura election," he reveals. Writing a book appeared to be quite a challenge but he began anyway. How to Win an Indian Election hit the stands in 2019 and was an instant bestseller. "Luck has its role to play," Shivam grins. There is a glut of books on politics, "written by people who have a lot more media support. Since my book came just before the Tripura election, timing had a big role to play in its success."

What does a political consultant do, then? "Usually, we're standing around wondering how to stick posters to walls or figuring out how everything sounds through the speakers," he laughs. "People imagine us sitting around tables and chalking up strategies. This happens, yes but it's only a small part of the process."

Infowars and the art of conjuring realities

After his exit from the political fray, Shivam joined a data analytics firm that worked on the national elections. "There was a lot of talk on how data influences politics. Then I met Anand Venkatanarayanan," he says adding, "At the time, he was testifying as an expert witness in the Pegasus case." Venkatanarayanan is a cyber security and privacy researcher who broke the story of the hack of Kundunkulam nuclear reactor by the North Koreans. He was also called as an expert witness before the Supreme Court of India in the Aadhar case. Shivam and Anand are co-authors of The Art of Conjuring Alternate Realities. Shivam's second offering as a writer, the book was released in 2021.

"It began with a simple enough theory," Shivam explains. "Human power was once decided by physical strength and the size of the tribe. Then, money became the center of power - colonial powers didn't have large armies but they had more money than the nations they conquered. Now, that power is shifting to information and our ability to control it. If I can shape the information you see, I can shape your perception."

Beijing-bound

He intends for this to be his line of work after he returns from Beijing. "Political parties are now doing at the local level, what intelligence agencies once did across nations, to shape optics," Shivam explains. "We have a low resilience population with the potential for many cultural fractures. How will these issues be weaponised," he asks. "How will the information warfare play out? How do we educate people about it?"

  • Follow Shivam on Instagram and Twitter

Reading Time: 8 mins

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Priyanka Yoshikawa: Proudly holding on to her Indo-Japanese identity

(April 23, 2023)Priyanka Yoshikawa (addressed as Yoshikawa Purianka in Japanese) became the second multiracial beauty pageant contestant to hold a winner’s title in Japan. She was crowned Miss World Japan in 2016. Born to a Bengali father and a Japanese mother, the twenty-nine-year-old is a master of many trades. Before holding the beauty pageant title, the youngster worked as a Japanese interpreter with a license in elephant training. The avid kickboxer and art therapist is now an entrepreneur helping people feel confident in their skin. [caption id="attachment_29470" align="aligncenter" width="607"] Priyanka Yoshikawa at the Miss Japan pageant[/caption] It was a teary trail-blazing triumph when Priyanka got successful in claiming the top title in Japan’s beauty pageant. The critics were completely against her participation. They felt that the title holder should have been a ‘pure’ Japanese rather than a ‘haafu’ - the Japanese term for ‘half’, often used to describe people from a mixed race in Japan. Priyanka’s predecessor Ariana Miyamoto was the first ‘haafu’ to hold the title in 2015 serving as her role model. “Ariana is an inspiration for showing me and showing all mixed girls the way," Priyanka had remarked after her win. Though the youngster who can fluently

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r than a ‘haafu’ - the Japanese term for ‘half’, often used to describe people from a mixed race in Japan. Priyanka’s predecessor Ariana Miyamoto was the first ‘haafu’ to hold the title in 2015 serving as her role model.

“Ariana is an inspiration for showing me and showing all mixed girls the way," Priyanka had remarked after her win. Though the youngster who can fluently communicate in Japanese, English, and Bengali, was confused about her identity growing up, she calls Japan her home after spending most of her life there.  

The pain of being a ‘haafu’  

More than the desire to prove her mettle as a beauty contestant, the Tokyo-born youngster’s main aim was to fight cultural barriers. Priyanka has been a victim of bullying since her childhood for her skin colour. After spending four years of her formative life outside Japan when the Indo-Japanese youngster returned to the country; she experienced huge discrimination. As a six-year-old Priyanka moved to Sacramento, California with her parents and stayed there for three years. From California Priyanka and her parents came to India for a year and stayed in Kolkata.  

When as a ten-year-old, Priyanka returned to Japan she was aghast at how people discriminated against her for being multiracial. "My dad is Indian and I'm proud of it, I'm proud that I have an Indian in me. But that does not mean I'm not Japanese," she said in an interview. "I know a lot of people who are ‘haafu’ and suffer," she added.

[caption id="attachment_29471" align="aligncenter" width="462"]Indian youth | Priyanka Yoshikawa | Global Indian Priyanka Yoshikawa with her parents when she was small[/caption]

Being different seemed to be more challenging in Japan than in the US and India. “I had the darkest skin out of anyone I knew. I stood out, and in Japan, that wasn't considered a good thing. The experience made me question my identity and opened my eyes to what that concept means,” she remarked.

A rich family legacy  

The youngster’s great-grandfather Prafulla Chandra Ghosh served as the first chief minister of West Bengal. Priyanka has grown up listening to stories of how Ghosh welcomed Mahatma Gandhi for a two-week stay at their home in Kolkata. Sharing her disappointments in dealing with racism, Priyanka remarked in an interview, "We have problems, we've been struggling, and it hurts,” adding “When I came back to Japan, everyone thought I was a germ.”  

However, instead of being bogged down by the discrimination hurled at her, Priyanka chose to be strong and vowed to challenge the attitude of people. Participating in the pageant was a step in this direction. Winning the Miss World Japan title was a big win for her because it led her to rise against the odds, particularly when it was her appearance that had been a matter of ridicule. 

[caption id="attachment_29472" align="aligncenter" width="479"]Indian youth | Priyanka Yoshikawa | Global Indian Priyanka during a family wedding in Kolkata[/caption]

"As Miss Japan, hopefully, I can help change perceptions. The number of people with mixed race is only going to increase, so people must accept it," she remarked.

Celebrating diversity through entrepreneurship  

Although it wasn't easy for Priyanka to face discrimination in Japan, her experiences catalysed her wanting to help people accept and embrace the way they were.  

In this effort, she launched MUKOOMI, a wellness and skincare brand in 2020. Derived from the Japanese words ‘mukou’ meaning ‘beyond’, and ‘miru’ meaning ‘to see’, the brand is dedicated to making people confident of who they are and celebrates diversity.

“MUKOOMI is my life's ambition, bottled. It represents who I am, and what I want to share with the world,” mentions Priyanka in her message on the company’s website.  

“MUKOOMI is a call to action. It means to see beyond typical beauty expectations and see beyond divides physical or metaphorical. New and exciting things are born from when we come together, and infuse our experiences, our journeys, share understanding and appreciation for one another,” she adds.

[caption id="attachment_29473" align="aligncenter" width="474"]Indian youth | Priyanka Yoshikawa | Global Indian Priyanka Yoshikawa[/caption]

The multifaceted youngster is dedicated to creating a successful business and has been interspersing her cause of inclusivity and respect for diversity to it. “MUKOOMI is based in Japan, but it goes beyond nationality, identity, gender, or skin type. It's for you!” is the strong message that Priyanka conveys to her fast-growing clientele.

  • Follow Priyanka Yoshikawa on Instagram 

Reading Time: 5 mins

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Eshani Jha: Teen using biofiltration to improve access to drinking water

(June 27, 2024) At the age of 17, Eshani Jha created a low-cost, water filtration device to address the problem of clean water around the world. Four years later, the San Jose teen was named winner of the Stockholm Junior Water Prize for her innovation, which uses biochar as a filtering material to produce drinking water. Eshani received a blue crystal award, a handmade diploma and a cash prize of $15,000 awarded by the Stockholm International Water Institute. Her work is also in keeping with the UN's SDG, in particular, SDG 6, which aims to ensure available and sustainable management of water and sanitation for all. For the San Jose teen, who is now at the University of Berkeley, the aim is to improve access to clean drinking water, sanitation facilities and hygiene practices, while addressing water scarcity, water pollution and water-related ecosystems. The clean water challenge "Water contamination is a key challenge of modern civilisation," the Global Indian said. "Nearly half the world's hospital beds are filled with patients suffering from water-related diseases. According to the UN's Environment Program, 80 percent of global wastewater goes untreated and contains a wide range of contaminants, from human waste to toxic industrial

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m, 80 percent of global wastewater goes untreated and contains a wide range of contaminants, from human waste to toxic industrial discharge. Severe pathogenic pollution affects around one-third of the world's rivers. Correct water filters are inaccessible to those who need them dueto tradeoffs between cost and effectiveness," the young innovator remarked. Her invention, she says, can lower the cost of use to less than $1 per month for consumers, if it is mass-produced.

[caption id="attachment_31179" align="aligncenter" width="1024"]Eshani Jha | Biochar | Stockholm Junior Water Prize Young innovator Eshani Jha[/caption]

The San Jose- teen is the winner of two of the top competitions for science and innovation - the Stockholm Junior Water Prize and the Regeneron Science Talent Search 2021. Eshani received recognition and a cash prize of US$150,000 for her innovative low-cost water filtration device called Biochar. Her invention not only removes heavy metals like lead but also addresses pesticides, microplastics, and pharmaceuticals in drinking water. Inspired by her Indian heritage and witnessing the plight of underprivileged communities during a trip, Eshani is determined to provide accessible solutions for water contamination issues. "I see a multitude of applications for this, and I also see great potential in targeting other contaminants too," Jha said. "My ambition is that this should be a one-stop filter."

The journey to the Stockholm Junior Water Prize

Jha's research is titled 'Thiol Functionalized and Manganese Dioxide Doped Biochar for the Removal of Toxic Organic and Inorganic Contaminants from Water" It was chosen for its applicability, the choice of a commonly-available material (biochar) and its potential for scaleability, the Stockholm International Water Instititute said later.

The young innovator began her work when she was a student at Lymbrook High School in San Jose, and was first recognized by the California Stockholm Water and Environment Association. Her research was chosen by a panel of engineering professors and board members of the CWEA, after which she went on to represent her state at a competition hosted by the Water Environment Federation. After being declared the winner there too, she went on to the SIWI international platform, competing against 44 finalists from 32 countries.

Eshani Jha's remarkable journey from a high school student to an internationally recognized innovator serves as an inspiration to young minds around the world. Her determination to address the global water crisis has led to the creation of a low-cost water filtration device that holds the potential greatly increase access to clean water.

Receiving the Stockholm Junior Water Prize and the Regeneron Science Talent Search 2021 accolades further solidifies Eshani's place as a pioneering force in the field of science and innovation. The recognition and cash prizes she has received not only validate her groundbreaking work but also provide her with the resources to continue her research and bring her vision to life.

Re-purposing bio waste

Eshani's invention, Biochar, not only filters out heavy metals but also tackles contaminants like pesticides, microplastics, and pharmaceuticals, ensuring cleaner and safer drinking water. Her commitment to addressing water pollution and scarcity aligns perfectly with the United Nations' Sustainable Development Goal 6, underscoring the relevance and impact of her work on a global scale.

With a clear vision of expanding the application of her filtration device to target other contaminants, the young innovator is determined to provide accessible solutions for water contamination. As Eshani Jha continues her journey at the University of Berkeley, her innovative spirit and dedication will undoubtedly shape the future of water filtration technologies. Through her groundbreaking research, she has opened doors to a world where clean drinking water is not a luxury but a fundamental right for all.

Reading Time: 4 mins

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The 50-state quest: How Priya Vulchi unveiled stories of race and identity across America

(January 23, 2024) Soon after graduating from high school, best friends Winona Guo and Priya Vulchi did what Asian immigrants in the US rarely do. They took a gap year. They travelled together to all 50 states of the US, in the hope of educating themselves about race, privilege and oppression. Over 250 days, they interviewed hundreds of people - "The youngest was a toddler, whose role model is Beyoncé, and the oldest is a Japanese immigrant, whose role model is also Beyoncé," they smile, at a TED talk in 2018. Vulchi and Guo are the founders of CHOOSE and back in 2017, developed a textbook, "The Classroom Index," working in collaboration with the Department of African American Studies at Princeton University, from where Vulchi also graduated in 2022. Growing up, both Guo and Vulchi had experienced racism and heard stories about it. "At the time, we were like, yes, we get it. Racism, we know." But they didn't know, they admit later. "If you don't go searching for an education on racial literacy, you won't get it," Vulchi remarks. Their understanding, they realised, had always been superficial, because of an inability to truly understand each other's experiences. So, in

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experiences. So, in 2014, the Global Indian co-founded CHOOSE, now a registered non-profit, because "we weren't talking about race," they write on the website. "At the same time, we realised that every part of our daily lives - from our neighbourhoods to our friend groups - were shaped by racial division."

[caption id="attachment_35391" align="aligncenter" width="646"] TED Residents Priya Vulchi and Winona Guo speak at TED Photo: Ryan Lash / TED[/caption]

Writing a textbook

They started out by simply listening to people's stories and sharing them on the website. One year later, they compiled the stories; along with "statistics and systematic context," in a 'textbook-toolkit' they called The Classroom Index. "We called our model a bridge for the heart-mind gap," they said.  The idea was to encourage people to actually have those discussions, and to get to know each other "at a soul-level," as they put it, rather than just at "an ego level." Besides, they believe, society must invest in an education that “values stories and statistics, the people and the numbers, the interpersonal and the systemic, there will always be a piece missing." Vulchi and Guo were also attempting to create a racial and intersectional literacy curriculum that could be used in schools. "That way, young people like us can grow up not only proud of their backgrounds, but caring about the communities we share. We imagine racial literacy as a 21st century life skill."

The textbook brought Priya Vulchi and Winona Guo so much attention that they landed a book deal with Penguin Random House. That inspired their journey across the US, which they funded on their own through textbook sales, cold-emailing corporates like Airbnb and Greyhound and GoFundMe. Tell Me Who You Are, Priya says, "is not a comprehensive overview of race in America in an academic sense, but our personal journey (and) what it was like meeting these people, purely listening to their stories and capturing them in the pages." They were 17 years old and travelling alone, couch surfing their way across the US. "Our goal was to interview hundreds of people about how race, culture and other parts of their identity have impacted their lives," the duo explains. "People cried, we cried, then we missed our parents and we cried some more," they laugh.

On the road in America

The journey was complex in many ways, from actually planning the trip, to finding themselves in dire situations, like when, in Montana, they were "too scared to interview downtown" because they had heard of white supremacists being around. There was also the emotional toll of hearing so many difficult stories, some of which were truly heartbreaking, like meeting a woman whose daughter had been killed in the Charlottesville protest. Then, in Kansas, they interviewed a man who had been "shot and told 'go back to your own country'." Their biggest challenge, however, was learning to deal with each other.

"Can you imagine living and travelling with a high school friend for 250 days," Guo said, in a talk. They argued a lot, over little things like personal space, or fighting over ointment when they ended up at a place with bedbugs. They realised that despite being best friends, they didn't fully understand each other all the time. In fact, they admitted, as they sat on sidewalks, in coffee shops and in people's homes, they felt close to the strangers they met more than they did to each other.

Discovering themselves - and each other

So, the two friends went back to the beginning, talking about their childhoods, the love they held for their parents but also the "painful cultural disconnect." Vulchi often wondered why her parents never said "I love you," like her friends' folks did, and Guo took a long time to accept that while the cool girls hung out at the country club, she had to spend 10 hours a day learning Mandarin. "We talked about the disgust and suspicion we felt at being fetishised as cute Asian girls, and being seen as naive and weak," Vulchi recalls. They were often lumped together as Asian Americans, when the Chinese American and the Indian American are so different in reality.

[caption id="attachment_35393" align="aligncenter" width="529"] Tell Me Who you Are, by Priya Vulchi and Winona Guo[/caption]

"Only now I was able to validate Priya's experience as the darkest skinned girl in her family," Guo said. "I shouldn't have invalidated this country's long history with Chinese Americans, nor should I have tolerated people telling my friend to edit photos to make her eyes bigger, or her body thinner," Vulchi chimed in. And these are the conversations they want to see happening. "Not the ego conversations like, who you're dating or where you went on vacation, but conversations that happen at the soul-level."

Learn more about Priya Vulchi on the CHOOSE website. 

 

Story
Amey Agarwal: Providing healthcare access to Nephrotic syndrome warriors

(January 31, 2024) Amid the hustle and bustle of Kolkata emerges a story of resilience, compassion, and a relentless pursuit of making a difference. Meet Amey Agarwal, a youngster who has not only won over a 15-year battle with nephrotic syndrome but has also transformed his personal struggle into an inspiration for others. Amey's commitment to raising awareness and providing assistance for those affected by nephrotic syndrome gave birth to Nephrophile - a nonprofit - which has till now helped 300 families and even earned him a Diana Award. Amey's journey with nephrotic syndrome, a condition causing the kidneys to leak large amounts of protein into the urine, began at a tender age. For 15 years, he battled the challenges that the condition brought with it but instead of succumbing to the adversity, he emerged stronger, driven by a deep-seated belief that every child, irrespective of their economic circumstances, deserves a chance to become an adult. [caption id="attachment_35533" align="aligncenter" width="525"] Amey Agarwal[/caption] Helping people affected by Nephrotic syndrome In his pursuit of making a meaningful impact, the 17-year-old founded Nephrohelp, a charitable community dedicated to supporting children suffering from nephrotic syndrome. His vision goes beyond mere sympathy; it is a

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/h5>
In his pursuit of making a meaningful impact, the 17-year-old founded Nephrohelp, a charitable community dedicated to supporting children suffering from nephrotic syndrome. His vision goes beyond mere sympathy; it is a mission to bring about positive changes in the lives of vulnerable families grappling with the harsh realities of this condition. The heart of Nephrohelp lies in its commitment to facilitating kidney transplants and providing essential support for those in need.

Through the relentless efforts of Amey and his team, the organisation has successfully raised funds and sponsorships, enabling life-changing kidney transplants for two children. "We are more than obliged and happy to help Warisha Khan (14 yrs) and Gaurav Mukherjee (13 yrs) by taking initiative in providing them all the medical necessities under the mentorship and guidance of Dr Rajiv Sinha, Professor & HOD of Pediatric Nephrology Division and thank him for extending his support for this noble cause," the student of St. Xavier's Collegiate School said in a statement.

The powerful impact

Beyond transplantation support, Nephrohelp has touched the lives of over 300 families by providing essential medicines and necessities. During COVID-19 pandemic, his compassion extended further as his organisation donated masks to hospitals, ensuring the safety of frontline workers. The impact of Nephrohelp is not confined to immediate assistance as his team organised awareness campaigns and health check-up camps, spreading knowledge about nephrotic syndrome and offering preventive healthcare to communities.

Amey Agarwal | Global Indian

His dedication and selfless service to bring about transformative change has helped him earn Diana Award 2023 - which speaks volumes about his dedication, resilience, and the positive ripple effect his work has on communities. It is his commitment to education and awareness that have played an important role in his journey as a young changemaker. Recognising the need to inform and empower, Amey co-authored a book Nephrohelp’s Guide to Nephrotic Syndrome, published in both Hindi and Bengali, to raise awareness on nephrotic syndrome. Of them, he donated over 2500 books in rural areas to not only provide valuable insights into the condition but also serve as a guide for others who may be navigating similar challenges.

Amey's advocacy extends beyond the immediate impact of Nephrohelp as his efforts have made nephrotic syndrome visible on a broader scale, challenging societal perceptions and fostering understanding about the struggles faced by those with this condition. In a world where compassion often takes a backseat, he has become a force that transcends boundaries, making a profound difference in the lives of many. He is now committed to provide treatment to over 200 children each year, which reflects his dedication to accessible healthcare.

His vision for a world where every child has the opportunity to grow into adulthood fuels the organisation's initiatives and inspires others to join the cause. In a society that often overlooks the struggles of those with chronic conditions, Amey proves that one person's belief in making a difference can indeed change the world.

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About Global Indian

Global Indian – a Hero’s Journey is an online publication which showcases the journeys of Indians who went abroad and have had an impact on India. 

These journeys are meant to inspire and motivate the youth to aspire to go beyond where they were born in a spirit of adventure and discovery and return home with news ideas, capital or network that has an impact in some way for India.

We are looking for role models, mentors and counselors who can help Indian youth who aspire to become Global Indians.

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