Sibling Leaders

At SOSNEEDS, we understand the vital role siblings play in supporting and advocating for their brothers and sisters with special needs. We proudly recognize and celebrate siblings around the world who have taken an initiative as part of their lives, despite their demanding careers to advocate for siblings living with varying conditions.

These dedicated individuals have made it their mission to create a more inclusive and supportive world for their siblings and others like them. Their selfless efforts and contributions are shaping a brighter future for siblings with special needs and their families. We honor their dedication, resilience, and love, and are inspired by their stories.

Pooja Sharma

A management graduate, Pooja has spent over fifteen years in the corporate world helping product owners and businesses grow, transform and reinvent themselves in an ever-changing world before setting up The Sarvodya Collective.

Sarvodya came to life as a month long awareness campaign run at the height of the pandemic in India, in August 2020, whilst everyone was at home knowing that persons with disability would be disproportionately impacted by the crisis and probably not get the necessary attention, it not even being a mainstream social sector issue.

Since then she has registered Sarvodya as a non profit org, focusing on two broad areas of work:

– driving awareness and sensitization around the issue via their digital platforms and events for the general public
– seeding support networks for families – parents / siblings.

They have just concluded their second awareness campaign, this time focused on Down Syndrome, sharing info, showcasing success stories and social enterprises that work in the space, and amplifying the message of parent and Sibling advocates.

Pooja has an elder brother who is a person with intellectual disability, and having seen how this community is so underserved in India, her home country, she decided to move back and spend her second innings contributing towards this space.

In her previous life, Pooja led various strategic initiatives for Pearson plc, whilst also serving on the board and governance bodies of not-for-profit foundations and schools in the United Kingdom in a non-executive capacity.

Over the years, she has also advised and mentored various socially oriented ventures globally. Pooja believes in the transformative power of education (in the broadest sense of the word), and in its ability to bring about positive personal and social change. She is deeply passionate about creating an
inclusive and equal opportunities world through her work.

To reach her on the above works or if you would like other info about her personally, she can be reached at
pooja.sharma@sarvodya.org

Fatimat Shotande

Born and raised in Florida, Fatimat Shotande, MD grew up with three younger siblings. Her youngest sibling, named Rashid, has Autism and Intellectual Disability. Fatimat observed firsthand that while there are more resources available for individuals with disabilities during childhood, they face increased challenges transitioning to adulthood as the support system diminishes.

This formative experience shaped Fatimat’s academic and career path. Inspired by a desire to care for individuals with disabilities throughout their lifetime, Fatimat chose to pursue dual medical specialties. After graduating from the Florida International University Herbert Wertheim College of Medicine in Miami, FL in 2020, Fatimat is currently a first-year Internal Medicine-Pediatrics Resident at the University of South Florida in Tampa, FL. This combined residency program allows Fatimat to develop expertise in treating patients across the lifespan, from childhood through adulthood.

Fatimat’s personal connection to disability issues and her commitment to comprehensive, lifelong care make her uniquely qualified to advocate for and serve this underserved patient population.

To reach her on the above works or if you would like other info about her personally, she can be reached at her instagram
@omololasho

Kelvin Lee Daniel Okenyi

Kelvin Lee Daniel Okenyi is a graduate from Middlesex University with a degree in International Studies and Rural Development & a Masters in International Relations. He has a passion for Agriculture and after his Masters at Cardiff University Wales has set up a budding agricultural business called Farm Well Initiative (FWI). Farm Well Initiative is an agro consultancy firm that encourages young people to go into agriculture showing them the benefits and opportunities in agro activities in the country.

He is an avid traveler, expanding his reach in Agriculture and currently lives in Nigeria. Kelvin’s passion for special needs advocacy stems from having a younger sister who is a person with
Autism and Intellectual disability. Her name is Onyebuchi Sandra but she goes by Bubu. She is a very beautiful woman who genuinely has a good heart, growing up she was misdiagnosed a lot of times and it led to the administration of wrong medical substances/solutions.

His experience so far as being a Special Needs Sibling is one of gratitude and thankfulness to God that he and his family now know the issues relating to Bubu’s diagnosis and the focus is to increase awareness about her case so younger children don’t suffer the case of being misdiagnosed as well as creating opportunities for adults like Bubu.

In his words “My older sister Ify set up SOSNEEDS after she could not get the right attention and solutions from people (Medical agencies/schools/parastatal) on Bubu’s case. The autistic community in Nigeria, especially in the cities (Lagos, Abuja and Port-Harcourt) are beginning to get the awareness that has since long eluded them but we still need to push further especially around rural areas and this is due to the efforts of organizations like SOSNEEDS, it’s a no brainer to support such efforts and champion it especially as it directly impacts families and raises the voices of Siblings which no one else had ventured into prior. I strongly believe that if more groups like SOSNEEDS are created and we all come together, the Stigma associated to Autism and Intellectual disability will greatly reduce.”

To reach him on the above works or if you would like other info about him personally, he can be reached via his email
kaaydanielokenyi@gmail.com

Mishka Sibert

Mishka is the Founder of a creative, impact-driven business called Happy Autism, where her autistic, non-verbal brother Samko serves as the Creative Director. This unique partnership allows Samko to gain greater independence as an artist, advocating loudly through his art and showing the world the amazing achievements of people with autism.

In addition to her entrepreneurial venture, Mishka is also a Certified Life Coach. In this role, she guides purpose-driven and impact-oriented leaders to get to the root of their fears, wounds, and limiting beliefs through inner child healing and reprogramming. By helping her clients rise above the false stories they’ve told themselves, Mishka empowers them to activate their highest, most badass version of self. This enables them to thrive in all aspects of their lives – from making a powerful impact with their story, to turning their trauma into purpose, to cultivating fulfilling relationships.

Mishka’s multifaceted experience as a sibling, business owner, and life coach uniquely positions her to support individuals with autism, as well as purpose-driven leaders who aspire to create positive change in the world. Her work is fueled by a deep personal connection and a steadfast commitment to empowering others to reach their full potential.

To reach her on the above works or if you would like other info about her personally, she can be reached at her instagram
@mishkasibert

Oluwatoyin Eria-Ajua Odunuyi

Oluwatoyin Eria-Ajua Odunuyi aged 22, resides in Lagos, Nigeria which is also her place of birth. She identifies as both a Nigerian and Ghanaian (maternal side). Toyin attended Caleb University, studying Mass communication and also specialized in print journalism from her third year in the university. She worked as an editor-in-chief for her university magazine “Caleb pioneer’’.
She is a young author of a total of thirteen books, all published digitally. She’s the mastermind behind the books “Finding Nathaniel, what I didn’t know, Quietus, Our Naija, we’re just kids, Extinction”. She also owns a blog that focuses on autism, as well as other disorders and disabilities.

In secondary school, she once won “Most likely to be a writer” in secondary school. She hopes to write fearlessly like her mentors. Oluwatoyin focuses more on the important topics of the world to write about; topics like Feminism, Gang violence, Female genital mutilation, sexual assault, government corruption, discrimination of disabilities and so much more.

This young authoress inspires to use her works as a form of correctional weapon to the problems of the society. She strongly believes in the saying “a pen is mightier than a sword”. Toyin’s dream is to curb homelessness in her country and provide housing shelters for young children.

Her most recent book “THE HIGHS AND LOWS OF HAVING A SIBLING WITH AUTISM” is due in April in honor of Autism Awareness Month and it’ll be part of the conversation on tomorrow’s IG live. The book is more of a guide for siblings and parents on how to live with their family member’s diagnosis
from Toyin’s experience and perspective.

This book explains how the struggle really is for siblings; how there are some good days and bad days. It speaks about the importance of knowing so much about your sibling and speaking up for them when there is a need to. The book also sheds light and awareness to some of the issues surrounding Nigeria about special needs. Its purpose is to uplift Special Needs families and the inspiration behind this book was her brother Tobi.

Her published works are either on Bambooks, Okadabooks or Wattpad.

To reach her and get more info on her works or if you would like other info about her personally, she can be reached via email at toyinodunuyi@yahoo.com

Dr Ariella Meltzer

Dr Ariella Meltzer is an adult sibling of a woman with a physical and intellectual disability, and a researcher in the field of siblings and disability. Based at the University of New South Wales in Sydney, Australia, Ariella has researched the sibling relationship, from the perspectives of siblings both with and without disability. She has also done research with the organisations who provide sibling support worldwide, with a focus on creating a typology of sibling support practices and profiling the business-operational circumstances of sibling support providers, many of whom are small non-profits and charities.

Ariella always aims for her research to make impact for siblings and their representative organisations on the ground, and has therefore been involved in translating the sibling-disability research evidence base to formats useful for community education, advocacy and policy-making. Outside of her sibling-disability-focused research, Ariella also does other research and evaluation across disability studies, youth studies and social impact.

To reach her and get more info on her works or if you would like other info about her personally, she can be reached via email at a.meltzer@unsw.edu.au

Charlene Chow

Charlene is the host of The Special Needs Sibling Podcast where we talk about what life is REALLY like as a special needs sibling. So many times as special needs siblings we fall to the side and forget how important we are. Having this podcast and an opportunity to talk with other special needs siblings about life is so validating and encouraging for me. And the best part is that other siblings just like me ALSO are validated and encouraged.

It was really important to Charlene that this podcast be informal because it’s just different for us as siblings to really be our “true” selves. We’re so used to wearing a variety of hats that don’t always suit us, and we just roll with the punches. But when we’re just hanging out with our inner circles or other siblings, there’s a whole other level of unlocking that occurs and it’s so much fun.

There’s so much laughter and pain and agony. But best of all, a real depth of friendship that can transpire because the bond between special needs siblings is like no other. And as painful as that was growing up (and can be as an adult), Charlene is really loving it on this podcast because of all the siblings across the country and around the world that I get to build friendships with.

To reach her and get more info on her works or if you would like other info about her personally, she can be reached via email at charlenejchow@gmail.com

Hamzah Mayaki

Hamzah Mayaki is a graduate with a degree in Business and Entrepreneurship. He is a creative director, digital marketer and Performance poet with Show Production and Promotion experience. Passionate about volunteering and helping the needy. He currently lives in Abuja, Nigeria.

He is the Founder of LOM (Love Of Mankind) an initiative set on a path to create new ideas to solve humanity complex problems by raising funds to help youths and street kids reach their dreams, and fostering unity among youths to make the world a safer and better place.

Hamzah has an elder sister who is a person with Autism and Intellectual Disability her name is Ramat.

In his own words “Hers is a mismanaged case of Autism”. Having seen how this community is so underserved in this part of the world, He volunteered with SOSNEEDS @sosneedsng to help take the urgency of persons living with Special Needs and Disability mainstream.

He believes there’s still HOPE, And there’s still light at the end of the tunnel.

To reach him on his works or if you would like to get other info about him personally, he can be reached at his instagram
@hamzahmayaki

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