Cure Pogz Disorders Foundation

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...

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

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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.

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.

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. 💙

04/03/2025

We are honored to deliver the keynote at the GDS Healthcare Summit on "The future of Healthcare - How Patient Leaders are driving innovation in Drug Development". In this keynote, we will explore how the future of healthcare will be co-created with patient leaders at the center. Learn about precision medicine and why it matters—from the voices of those who need it the most.

03/21/2025

Big news in our fight against rare genetic disorders!

We’re thrilled to share that the JAX Rare Disease Translational Center has officially accepted the POGZ Mouse Model Project for funding under their U54 grant from the JAX Center for Precision Genetics. This crucial support will enable the creation of a targeted mouse model focused on a specific stop variant—an important step toward developing potential treatments for POGZ-related disorders.

A heartfelt thank you to the entire team at The Jackson Laboratory for believing in our mission and investing in the science that will help change human lives. Your partnership is a beacon of hope for families affected by POGZ disorders.

Learn more and change lives at https://www.curepogzdisorders.org/

03/13/2025

Thank you Mathrubhumi for the interview to highlight our fight against the clock to fund a cure for Ved. We are not just advocating for Ved, but all children affected by rare diseases who deserve a chance at a better life.

Every share, conversation, and act of support brings us a step closer to achieving our mission.

Read the full story at

https://english.mathrubhumi.com/features/specials/swapna-sasidharan-pogz-disorder-syndrome-ved-nambiar-fightimg-rare-disease-1.10414035

Swapna Sasidharan is not the kind of mom who has endless energy for trips or someone who spends her day at ease after a long, exhausting shift. She is not the mom who dreams of escaping on a vacation for a breather or who can relax whenever she pleases.

02/28/2025

Thank you, Daily Herald, for giving a voice to our story.

If it were just for me, I might have stopped—but for my kids, I can never stop fighting.

At the end of 2023, my son 'Ved' was diagnosed with a very rare disease called 'Pogz Syndrome'. There are no known treatments or cures.

One of the real challenges of being "rare", the drug development is left to the affected family.

Join us as we are racing against the clock to raise $5M while working with scientists and our community to develop a cure for Ved and other Pogz patients. The breakthroughs from this work has the potential to cure many common diseases like Cancer and Alzheimers.

Donate and be a part of our story : https://givebutter.com/cureforved

Every dollar counts. A simple share goes a long way.

Thank you.

Read the full article here: https://www.dailyherald.com/20250226/news/schaumburg-moms-mission-is-to-find-cure-for-sons-rare-condition/

02/27/2025

is an annual day dedicated to spreading awareness of rare diseases. is tomorrow 2/28.

This year, we are honored to be a part of advancing diagnostics and developing a cure for the incurable.
https://curepogzdisorders.org

A disease is considered rare if it affects fewer than 200,000 people. There are 10,000 known rare diseases in the world, 95% of them lack an FDA approved treatment.

Together, we can raise awareness, drive research, and push for better treatments!

02/06/2025

Cure Pogz Disorders Foundation applauds Congressmen John Joyce and Don Davis for their leadership in introducing the ORPHAN Cures Act (OCA) (H.R. 946). This vital legislation has the power to change the future for the community.

This bipartisan bill will address a key issue in current law that impedes innovation for rare diseases by discouraging research of multiple rare diseases. Currently, less than 10% of rare diseases have an FDA-approved therapy, and strong bipartisan incentives to accelerate research are needed more than ever.

We look forward to working with members of the 119th Congress to help bring hope for many individuals living with rare diseases that are still without treatment options, and bring brighter futures for the over 30 million Americans affected by rare diseases.

01/29/2025

A huge thank you to the University of Chicago Booth School of Business for lending their incredible support for Cure Pogz Disorders Foundation! We are very excited to welcome Kevin Leba, Sambhav Sharma and Felix Contreras-Castro stepping in as board fellows for CPDF. Together, let us make strides to create a better future for those affected by POGZ disorders while accelerating social sector impact and innovation.. 💙

👉 Learn more about our mission and how you can help at https://www.curepogzdisorders.org/