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Shaping Foundations - Raising awareness for the rare disease community

Updated: Mar 31, 2021

Hello! Our names are Pooja Shah, Liesha Yenduri, and Cayla Xue.

We are three of the four co founders from Shaping Foundations, a US-based nonprofit organisation dedicated to advocating, raising awareness, and raising awareness for the rare disease community. We have one more cofounder, Anirudh Koneru.

RARE Youth Revolution magazine is an amazing publication that we all love to read, so we are honoured to talk about our experience on this platform!

First, here is a little bit about us. We are all friends who met at high school; our school focuses on the medical field and students passionate about helping the community around us.

We had learned about several rare diseases in school and we were curious about this, but the need for action in the rare disease community hit home when we read an article about a father who had a son with a rare disease. The article spoke about how helpless the father felt, and we all knew we had to do more for this community.

As we did more research, we knew that we had to use our knowledge and passion to make an impact on the rare disease community.

After this, we started planning what we wanted to do. We knew that, as kids familiar with social justice campaigns on social media, using various media forms would allow us to make the most unique impact.

Our organisation became official in April of 2020. Shaping Foundations is a student-led nonprofit, so all of our filings were done by us (Pooja, more specifically).

Once we were up and running, we quickly started creating content from our research. This included infographics on why rare diseases are important to pay attention to and their relevance around the world.

To our surprise, we were able to speak to many rare disease patients and other advocacy groups. We are so honoured to have been able to speak with so many amazing people (including RARE Youth Revolution!) and learn so much not only about the rare disease community, but also about strength and resilience.

As you may have noticed, three of the four co-founders of Shaping Foundations are women!

We are so lucky that at such a young age, we’ve been able to start a business and make an impact on our community in a unique way.

We each have our female inspirations (Sheroes, if you will) that help us understand how to navigate difficult situations. Being young is a difficult challenge when running a business; we have to work out timings with school and many people don’t believe us or want to talk to us because they don’t trust such young kids. Furthermore, being women in a more managerial position can be difficult because women are generally not expected to be so forthcoming.

Being assertive can be difficult in situations where there are reminders that normally, we may not have such a position. Our biggest inspirations are the women in the rare disease community!

There are so many strong women out there who have taken their rare disease diagnosis and made it into an amazing advocacy and education experience. Shyamala Peesapati, among many other women we work with, is an amazing example of this. She was able to take a rather tragic event in her life and connect with so many people, helping others navigate a rare disease diagnosis.

Someone else we work with is Victoria Jackson; her story is so inspiring because of how strong she had to be to get a diagnosis and her treatment.

As we spoke to her, we all learned how important it is to believe in yourself and to always stand up for what you know is correct.

All of our collaborators help us through our struggles and remind us of the importance of our work.

Thank you so much for taking the time to learn about us! We appreciate this a lot, and thank you so much to Rare Youth Revolution for giving us the platform to talk about our experiences!


You can find out more about who Shaping Foundations are and what they do by visiting their website HERE!


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