Hope for PDCD Foundation

Hope for PDCD Foundation Collaboration and research for genetic medicine for Pyruvate Dehydrogenase Complex Deficiency.

💚💜 As PDCD Awareness Day comes to a close, thank you to every family who shared their story, honored a loved one, and he...
10/13/2026

💚💜 As PDCD Awareness Day comes to a close, thank you to every family who shared their story, honored a loved one, and helped make PDCD visible.

For PDCD families, awareness isn’t limited to one day. Every day revolves around PDCD—the care, the appointments, the uncertainty, the milestones, and the love behind it all. For families who have lost someone, PDCD remains part of everyday life through their love and grief.

Today doesn’t change that reality. But we hope seeing your stories shared and your loved ones honored helped you feel seen, supported, and a little less alone.

Thank you to everyone who wore green and purple, shared our posts, donated, or took the time to learn. You helped remind our families that their community reaches beyond their own homes.

Every story matters. Every family belongs. And our connection continues beyond today.

💚💜 Turn awareness into hope.This PDCD Awareness Day, we’re highlighting two U.S.-based organizations dedicated to advanc...
10/12/2026

💚💜 Turn awareness into hope.

This PDCD Awareness Day, we’re highlighting two U.S.-based organizations dedicated to advancing research for Pyruvate Dehydrogenase Complex Deficiency: Hope for PDCD Foundation and The Elizabeth Watt PDCD Research Fund.

For families facing PDCD, research represents hope for more effective treatments, more milestones, and more time together.

Consider making a donation in honor of someone you love, in memory of someone we’ve lost, or for the families hoping for a brighter future.

💜 Hope for PDCD Foundation
https://givebutter.com/hopeforpdcdstage2

💚 The Elizabeth Watt PDCD Research Fund
https://pdcdresearchfund.com

Every gift matters. Every share helps. Thank you for standing with the PDCD community.

💚💜 Behind Hope for PDCD Foundation are parents who understand this journey—because they live it, too.Founded in 2022, ou...
10/12/2026

💚💜 Behind Hope for PDCD Foundation are parents who understand this journey—because they live it, too.

Founded in 2022, our foundation is run entirely by parent volunteers united by a shared purpose: advancing research, advocating for our community, and helping families facing Pyruvate Dehydrogenase Complex Deficiency find resources, connection, and hope.

This PDCD Awareness Day, we want to say a heartfelt thank you to the parents who make this work possible. Between appointments, therapies, caregiving, jobs, and the demands of everyday life, you give your time, talents, and hearts to help move our community forward.

We also honor the parents who carry their children’s memories into this work. Your children remain part of our community and our reason to keep going.

To every family navigating PDCD: whether you are newly diagnosed or years into this journey, you belong here. No family should face PDCD alone.

Awareness can become action. 💚💜For PDCD families, research represents hope for better treatments, more milestones, and m...
10/12/2026

Awareness can become action. 💚💜

For PDCD families, research represents hope for better treatments, more milestones, and more time together. Progress begins with understanding the disease—and continues through scientists, clinicians, families, and advocates working together.

This PDCD Awareness Day, we’re asking you to help our community be heard.

📣 Haven’t sent your letter yet? Use UMDF’s action link to contact your members of Congress and urge timely, flexible FDA review of SL1009 (DCA).

You don’t need to know someone with PDCD to stand with our families. Your voice can help bring attention to the needs of this community.

👉 Send your letter here:
https://umdf.secure.nonprofitsoapbox.com/dcareview

Already participated? Thank you! Please share this post and invite someone else to take action.

Our families bring the stories. Research brings possibility. Together, we keep pushing for progress. 🦓

“Does it run in your family?” For many PDCD families, the answer is no. 💚💜A genetic condition can occur without a known ...
10/12/2026

“Does it run in your family?” For many PDCD families, the answer is no. 💚💜

A genetic condition can occur without a known family history. A de novo variant is a new genetic change appearing for the first time in a family.

PDHA1 is the most common genetic cause of PDCD, but other genes can also be involved. Swipe to learn more about the genetics and what “de novo” means.

For families receiving a diagnosis, these unfamiliar terms can become part of everyday life almost overnight. Understanding them helps us better understand one another’s experiences.

🦓 This PDCD Awareness Day, share these facts to help our community feel seen and understood.

Every movement. Every thought. Every heartbeat. Our bodies depend on energy. 💚💜On PDCD Awareness Day, swipe through to l...
10/12/2026

Every movement. Every thought. Every heartbeat. Our bodies depend on energy. 💚💜

On PDCD Awareness Day, swipe through to learn what Pyruvate Dehydrogenase Complex Deficiency is, how it can affect the body, and why each person’s experience is different.

PDCD can be life-limiting, but no statistic tells an individual’s whole story. Behind every diagnosis is a person with their own personality, milestones, challenges, and people who love them.

Understanding PDCD helps us better understand and support the families living with it.

🦓 Share this carousel to introduce someone to PDCD or help another family find our community.

Every person deserves to be seen. Every family deserves to know they are not alone.

💚💜 Today, October 12, is PDCD Awareness Day.Today, we honor those we have lost, celebrate those living with Pyruvate Deh...
10/12/2026

💚💜 Today, October 12, is PDCD Awareness Day.

Today, we honor those we have lost, celebrate those living with Pyruvate Dehydrogenase Complex Deficiency, and stand beside every family navigating this rare diagnosis.

For our community, this day means being seen. It means helping another family find connection. It means sharing our stories and building hope for a future with better treatments and, one day, a cure.

To every person and family affected by PDCD: your story matters, and you are not alone.

Join Hope for PDCD Foundation today:
💚💜 Wear green and purple.
🦓 Share your loved one’s story.
📲 Share our posts to help others learn about PDCD.

Tell us who you’re honoring today, and tag us in your posts so we can share your stories throughout the day.

Together, we bring awareness. Together, we bring hope.

💚💜 Tomorrow, October 12, is PDCD Awareness Day.For families affected by Pyruvate Dehydrogenase Complex Deficiency, a rar...
10/11/2026

💚💜 Tomorrow, October 12, is PDCD Awareness Day.

For families affected by Pyruvate Dehydrogenase Complex Deficiency, a rare diagnosis can feel incredibly lonely. Having a day dedicated to PDCD helps our families feel seen, connects us with one another, and reminds us that our stories matter.

Tomorrow, we honor those we have lost, stand alongside those living with PDCD, and raise our voices for research and hope.

You can help:
🦓 Share a loved one’s story.
💚💜 Wear green and purple.
📲 Share our posts to help more people learn about PDCD and find our community.

Tag Hope for PDCD Foundation and use so we can celebrate and remember together.

Every story. Every share. Every show of support matters.

To every PDCD family: you are not alone. 💚💜

💚💜 Mark your calendars! October 12 is PDCD Awareness Day.Join Hope for PDCD Foundation as we honor those we have lost, s...
10/08/2026

💚💜 Mark your calendars! October 12 is PDCD Awareness Day.

Join Hope for PDCD Foundation as we honor those we have lost, stand alongside everyone living with Pyruvate Dehydrogenase Complex Deficiency, and build hope for the future.

Over the coming days, we’ll share information about PDCD, why research matters, and ways you can help turn awareness into action.

Help us spread the word: share this post, invite others to follow along, and tell us who you’re honoring this October 12. 🦓

Every story matters. Every family deserves hope.

🚨 PDCD COMMUNITY—WE NEED YOUR VOICES! 🚨The FDA is currently reviewing the resubmitted NDA for SL1009 (dichloroacetate/DC...
09/22/2026

🚨 PDCD COMMUNITY—WE NEED YOUR VOICES! 🚨

The FDA is currently reviewing the resubmitted NDA for SL1009 (dichloroacetate/DCA), a potential first approved treatment specifically for PDCD. The current decision date is December 30, 2026, but our children cannot afford unnecessary delays.

UMDF has made it easy to contact the FDA and urge the agency to review DCA with the speed, urgency, and regulatory flexibility our ultra-rare community deserves.

Please take just a few minutes to act:

🔗 https://umdf.secure.nonprofitsoapbox.com/dcareview

If you are a parent or caregiver, you can personalize the message with your family’s story. If you are a friend, relative, clinician, researcher, or supporter, your voice matters too. Then share the link and ask others to participate.

We have already waited more than a year since the original Complete Response Letter. Every day matters for children living with this progressive and life-threatening disease.

Please don’t assume someone else will speak up. Together, we can show the FDA that the PDCD community is united—and that our children are waiting.

Address

1106 Buckbrush Drive
Folsom, CA
95630

Website

Alerts

Be the first to know and let us send you an email when Hope for PDCD Foundation posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Share

Category