Hope for PDCD Foundation

Join us on Thursday, July 24 for a special webinar featuring Dr. Steven Gray from The University of Texas Southwestern Medical School. Dr. Gray will discuss the latest progress in our ongoing PDCD gene therapy research. Registration Link: @119aa950-fa15-47d1-a738-f1185c974541" target="_blank" rel="nofollow noopener">events.teams.microsoft.com/event/3a526016…

@sama Ask chatGPT

an idea for paid plans: your $20 plus subscription converts to credits you can use across features like deep research, o1, gpt-4.5, sora, etc. no fixed limits per feature and you choose what you want; if you run out of credits you can buy more. what do you think? good/bad?

We have reached the milestone of our first $1,000,000 raised for PDCD research and advocacy. Thank you to all! If you'd like to donate to our second stage of fundraising, please go to hopeforpdcd.org/donate. Every dollar is invested wisely back into research and advocacy.

Saol Therapeutics announces FDA acceptance of New Drug Application for SL1009 for treatment of Pyruvate Dehydrogenase Complex Deficiency See the full press release at prnewswire.com/news-releases/…

Ordering holiday cards? Get 20% off your purchase with Minted with code 𝐅𝐔𝐍𝐃𝐑𝐀𝐈𝐒𝐄𝐏𝐃𝐂𝐃 at checkout! minted.com #holidayseason #Christmas #December #minted

The difference between a patient registry & a natural history study can often be a source of some confusion in the rare disease community. Read about the PDCD Natural History Study at UPMC at: hopeforpdcd.org/natural-histor…. Read about the Patient Registry at hopeforpdcd.org/patient-regist….

Our mouse model proof of concept study at UTSW is showing promising data in terms of viability. The PDHA1 knockout mouse is showing initial signs of replicating the disease in humans, allowing the experiment to progress to the next stage.

Sophia Zilber and Frances Muenzer Pimentel from @hopeforpdcd spoke to @OnceUponAGene about our registry collaboration to align our data and ease the burden for Leigh syndrome and PDCD families. effieparks.com/podcast/episod… #leighsyndrome #mitochondrialdisease

Today live on instagram @3pm PST (@hopeforpdcd)

Cure Mito Foundation (@cure_mito) and Hope for #PDCD Foundation (@hopeforpdcd) announce a patient registry collaboration focused on research and family support - check the link for more ow.ly/sjuo50QWPYT #rarediseases #orphandrugs

@CheckOrphan @cure_mito Awesome news!

@cure_mito @SanfordCoRDS So great to have this collaboration!

Exciting announcement! We have joined together with @hopeforpdcd to have both of our registries on the @SanfordCoRDS platform, ease the burden for 25-35% of patients who have both Leigh syndrome and PDCD and get better quality data! eurekalert.org/news-releases/… #leighsyndrome #pdcd

@hopeforpdcd has launched a patient registry! 1st international registry that is specific to PDCD & has been informed by both PDCD caregiver, patient & clinician input. hopeforpdcd.org/patient-regist… to enroll. @SanfordResearch @cure_mito #pdcd #raredisease

Charlie Coyle(@CharlieCoyle_3) is doing charity event to win 2 VIP Bruins tickets, tour the Bruins locker room with him & it includes Transportation and hotel accommodations. Info: alltroo.com/rally/charlie-… Confirmation on his instagram: instagram.com/charliecoyle_3…

@outland_ash Cute!

#RareDiseaseDay2024 celebrating my girl and her rare stripes! #pyruvatedehydrogenasecomplexdeficiency @hopeforpdcd

📷 Please take a moment to review our 2023 annual report, which highlights our accomplishments for the year, our budget , and our direction for 2024. 📷 Thank you to this community for your continued support! 📷 givebutter.com/messages/view/…

Last week, UMDF was proud to co-host an FDA Listening Session for Pyruvate Dehydrogenase Complex Deficiency (PDCD) with fellow patient advocacy groups @MitoAction, @hopeforpdcd, and Elizabeth Watt PDCD Research Fund. Read the full article at bit.ly/PDCDandFDArele…