Cure Pogz Disorders Foundation

Cure Pogz Disorders Foundation We are a patient advocacy group dedicated to finding a cure for and will be sharing our journey along the way.

Special thanks to Northwestern University for creating a platform where exceptionally bright students bring fresh, meani...
12/16/2025

Special thanks to Northwestern University for creating a platform where exceptionally bright students bring fresh, meaningful perspective to mission-driven work. We are deeply grateful to the Northwestern University students for choosing ‘Cure POGZ Disorders Foundation’ for their strategic analysis and for delivering sharp, thoughtful strategies across return on investment, healthcare cost drivers, investor incentives, commercialization, donor engagement, and grant funding. Their work combined rigorous analysis with real-world practicality, offering insights that will directly shape how CPDF thinks about scale, sustainability, and impact. And a special shout out to Melinda Wang for her leadership throughout the project.
Smart Minds, real impact!

Special thanks to Northwestern University for creating a platform where exceptionally bright students bring fresh, meani...
12/16/2025

Special thanks to Northwestern University for creating a platform where exceptionally bright students bring fresh, meaningful perspective to mission-driven work. We are deeply grateful to the Northwestern University students for choosing 'Cure POGZ Disorders Foundation' for their strategic analysis and for delivering sharp, thoughtful strategies across return on investment, healthcare cost drivers, investor incentives, commercialization, donor engagement, and grant funding. Their work combined rigorous analysis with real-world practicality, offering insights that will directly shape how CPDF thinks about scale, sustainability, and impact. And a special shout out to Melinda Wang for her leadership throughout the project.
Smart Minds, real impact!

We’re excited to share that Cure Pogz Disorders Foundation has won 𝟮𝗻𝗱 𝗽𝗹𝗮𝗰𝗲 at this year’s Chicago Booth/Golub Capital ...
12/03/2025

We’re excited to share that Cure Pogz Disorders Foundation has won 𝟮𝗻𝗱 𝗽𝗹𝗮𝗰𝗲 at this year’s Chicago Booth/Golub Capital Board Fellows Program showcase.

Our 2025 Board Fellows - Felix Contreras-Castro, Sambhav Sharma, and Kevin Leba built a great actionable playbook that strengthens our path to funding a cure for children with rare POGZ disorders which made us secure our award.

Our heartfelt thanks to our Board Fellows, University of Chicago Booth School of Business and Golub Capital for supporting nonprofits like ours and championing meaningful board service. We are truly grateful.

Summer has ended, but this one will stay in our hearts forever❤️Sloka and her best friend Ananya turned into little entr...
11/09/2025

Summer has ended, but this one will stay in our hearts forever❤️

Sloka and her best friend Ananya turned into little entrepreneurs this summer! They planted tulsi, sweet peppers, basil, lilies, tomatoes and many other plants. They sowed every seed, cared for each plant daily, and ran a beautiful summer plant sale right here in Schaumburg to support Ved. 💚

I could not be more proud of their effort, teamwork, and determination. It was hard work, but they learned firsthand what it means to build something with purpose.

Huge thanks to Ami Modi for the idea and love—and to everyone who bought plants and supported these two little entrepreneurs. 🌿❤️

If you did not know about the sale and want to support Ved, you can donate at: https://givebutter.com/cureforved

We are honored to receive this award and extend our sincere gratitude to the Rare Genes Movement for their support. Cont...
11/04/2025

We are honored to receive this award and extend our sincere gratitude to the Rare Genes Movement for their support. Contributions like yours help us expand awareness, build global collaborations, and move the field closer to meaningful treatments for POGZ-related disorders.

Cure Pogz Disorders Foundation is excited to be joining as a guest at "Meet the Expert on the Block" podcast this Wednes...
09/21/2025

Cure Pogz Disorders Foundation is excited to be joining as a guest at "Meet the Expert on the Block" podcast this Wednesday, September 24, 2025, at 5 PM live-streaming on Facebook, LinkedIn, Instagram, and YouTube.

Our CEO will be sharing her journey as the Founder & CEO of Cure Pogz Disorders Foundation and talking about an important question: What is POGZ and what is our foundation doing?

This is a chance to learn about what is going on in your community and how you can be a part of something bigger than yourself and be driving meaningful change.

A big thank you to Dawn Block for hosting us and supporting local non-profits. If you are available, tune in at https://www.facebook.com/events/819994987375897/

👉 I hope you’ll join us and be part of this conversation.

A Big Thank you to the Rotary Club of Schaumburg A.M. for the invite as a keynote speaker today to share the important w...
09/17/2025

A Big Thank you to the Rotary Club of Schaumburg A.M. for the invite as a keynote speaker today to share the important work we are doing in the community.

It was a privilege to share our work and highlight the journey that began with a rare disease diagnosis and has grown into a mission for change.

Our journey underscores resilience, determination, and the ability of focused action to drive meaningful change in healthcare. Thank you for the opportunity to raise awareness and to connect with a community committed to service and making an impact.

Thank you to  for beautifully capturing my journey as a mom and our mission to find a cure for our son Ved’s rare disord...
08/05/2025

Thank you to for beautifully capturing my journey as a mom and our mission to find a cure for our son Ved’s rare disorder. 💙

Every word in this piece reflects the hope, determination, and love that fuels our work at the Cure POGZ Disorders Foundation.

Please take a moment to read and share the article:
https://www.ronkritconsulting.com/post/the-mom-who-took-on-genetics-swapna-sasidharan-s-mission-to-cure-rare-disease

Together, we can shine a light on rare diseases and bring real change.

When Swapna Sasidharan’s son was diagnosed with an unnamed rare disorder, she turned from tech exec to biotech trailblazer. Her research uncovered a single gene mutation—POGZ—and led her to launch the Cure POGZ Disorders Foundation. Now, she’s building a gene therapy model to help her son an...

Proud to share that Our fight to find a cure for POGZ-related disorders has made it to the front page of Illinois Tech M...
06/19/2025

Proud to share that Our fight to find a cure for POGZ-related disorders has made it to the front page of Illinois Tech Magazine.

Grateful to Illinois Tech for shining a light on our story—and to Dr. Elizabeth Berry-Kravis, our key Scientific Advisory Board member, for her confidence in us, her unwavering commitment to science, and for being a true example of empowerment. Her support fuels our determination to drive meaningful impact.

Every life matters. Every child deserves a chance at a fuller life. And we can't afford to wait.

We push forward—with purpose, urgency, and hope.
https://issuu.com/illinois_tech/docs/illinois_tech_magazine_spring_2025
Read Full article - Pages 9,10 and 11

Welcome to Issuu’s blog: home to product news, tips, resources, interviews (and more) related to content marketing and publishing.

Grateful to join as a guest at the Women’s Board of Rush University Medical Center  Spring Luncheon, thanks to a kind in...
05/30/2025

Grateful to join as a guest at the Women’s Board of Rush University Medical Center Spring Luncheon, thanks to a kind invitation from Rosemary Matzl. It was so inspiring to hear from Dr. Omar Lateef, CEO of Rush, as he shared powerful insights on how Rush is shaping the future of healthcare with purpose and principle.

The event also featured bestselling author Anne Lamott, known for her honest, humorous take on life’s challenges. Honored to be among an inspiring group of women leaders deeply committed to advancing healthcare and supporting Rush’s powerful mission.

Last week, we had the honor of delivering the Gala Keynote at the Chicago Healthcare Summit on a topic very close to our...
05/13/2025

Last week, we had the honor of delivering the Gala Keynote at the Chicago Healthcare Summit on a topic very close to our heart: "The Future of Healthcare - How Patient Leaders Are Driving Innovation in Drug Development."

It was truly an inspiring moment to speak in front of a room full of healthcare executives from across the industry — including leaders from MD Live, Advocate Health, Parkview Health, Northwestern Medicine, Rush University, Duke Health, Jackson Health, and many others.

A heartfelt thank you to the GDS Group Healthcare Summit organizers for the opportunity to share this very important message and be part of a conversation that is shaping the future of care through precision medicine and artificial intelligence.

🔍 POGZ by the NumbersPOGZ-related disorders are among the rarest genetic conditions, with only around 500 individuals di...
04/20/2025

🔍 POGZ by the Numbers

POGZ-related disorders are among the rarest genetic conditions, with only around 500 individuals diagnosed worldwide as of 2024. These disorders result from mutations in the POGZ gene and profoundly impact development, behavior, and speech. Every diagnosis represents not just a statistic, but a family seeking hope, answers, and a brighter future.

All individuals with POGZ disorders experience developmental delays or intellectual disabilities, with speech delays being especially common.
45% are diagnosed with ADHD, and 59% face behavioral challenges such as anxiety, hyperactivity, and obsessive behaviors.

Despite their rarity, these disorders deserve attention, funding, and research to improve the lives of affected families.

We’re committed to raising awareness and advocating for better treatments. Your support can make a difference. 🌟 Visit curepogzdisorders.org to learn more about POGZ disorders and how you can help advance research.

Let’s bridge the gap in rare genetic research together. 💙

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2309 Aimee Lane
Schaumburg, IL
60194

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