Avani Deshpande is not your typical ninth grader. She’s a compassionate entrepreneur who is raising awareness and funds for ectodermal dysplasias in honor of her sister.

Avani’s passion for volunteering arose from watching her younger sister Matali live with ectodermal dysplasias. She wanted to make a difference by raising funds and awareness for the National Foundation for Ectodermal Dysplasias (NFED) and ectodermal dysplasias.

Avani Deshpande, volunteer
Avani Deshpande

A 9th grader at William G. Enloe Magnet High School in Raleigh, N.C., Avani learned how to make soy candles in several popular scents.  She sells them from her home and at entrepreneurship events.  She includes an information sheet about ectodermal dysplasias and an NFED brochure with each candle she sells. So far, Avani has raised $500!

Avani has a passion for advocacy and law.  She has participated in mock trial competitions where she has won “Best Witness” awards. She wants to be a future advocate for people affected by rare disorder.

Avani is the first person to sign up for the Presidential Volunteer Service Award that the NFED is part of. She is tracking her hours to earn one of the awards. She continues to be a helping hand for the NFED by blogging about her experiences.  Read in Avani’s own words why she volunteers.

“I remember the cold, rainy day in February when my shadow was born. The months leading up to this magical event had been full of excitement at first, and anxiety as doctors told us about my sister being born with complications.

She beat all expectations and turned out to be a normal, cute, following-you-everywhere annoyance that younger siblings usually are. There was something different about her – she was said to have a very rare genetic disorder called ectodermal dysplasia. As I researched this with my family, I felt this need to do something to raise awareness and spread the word.

Hiking in the woods, one evening in the fall, I saw a light at a distance. The flame flickered, and the answer came to me. I was going to make and sell scented candles. A source of light, and also scents – the message of ectodermal dysplasia would travel far and wide with my candles.

Avani makes her own candles and sells them to raise money for ectodermal dysplasias.

A Source of Light

The money we raise would go towards research in the hope of someday conquering genetics. The awareness would lead to more acceptance in society and around the world.

I learned to make candles out of environmentally friendly soy wax, and to design fragrances – cool summer mists in blue, autumnal pine in browns, verdant sprinkles in green for spring, and festive ones for winter.

I learned to sell my candles at garage sales, at entrepreneurship fairs and at events I hosted.  Using these opportunities to get to know people and to talk about the NFED.  I learned to keep books, order supplies and to fill orders – what we call “business.”  Importantly, research led me to think about genetics and biology – made me a student for life ever curious about regenerative medicine, gene therapy, and about disabilities and the law.” – Avani 

Avani, with her sister, Mitali, and their parents, Rahul Deshpande and Sharvari Sane.

I volunteer for all of these benefits.  In the end though, that smile, that silly, often toothless grin on that little imp’s face, the laugh that tugs directly at my heart – that’s why I volunteer. To know that I made a difference, that she and the millions of others just like her can count on me for a better tomorrow- that is why I volunteer.


Expanding Our Volunteer Team

Are you interested in volunteering? We are always looking to recruit new helping hands to our team.


If you have any questions or just aren’t sure how you might be able to help, call me, Lea, at 618-566-6871. I would love to talk to you and see how we can work together and best use your talents.

Leave a Reply

Your email address will not be published. Required fields are marked *