Start Genetic

We're thrilled to have Jenny Graham Beeson representing Start Genetic at the Profound Autism Summit this week! 🧬 As a CureSHANK board member, founding advisor of Start Genetic, and a mom of two children with profound autism, Jenny brings both professional expertise and deeply personal experience to this conversation. The Profound Autism Summit brings together leaders in research, medicine, treatment, advocacy, and education to address the full spectrum of needs for individuals with profound autism across disciplines and throughout the lifespan. For so many families in this community, genetic answers are still missing or incomplete. Start Genetic exists to change that -- empowering families to ask the right questions, access testing, and find the clarity they deserve. 🔗 Learn more at startgenetic.org @profoundautism @profoundautismsummit @jennygrahambeeson #ProfoundAutismSummit #StartGenetic #CureSHANK #GeneticTesting #ProfoundAutism #ProfoundAutismAlliance #RareDiseaseAwareness

🎧 CureSHANK Board Director Jenny Graham Beeson was recently featured on the Rare Connection podcast. And this one is not to be missed. Two of her children were diagnosed with separate rare genetic conditions on the same day. That moment started her on a path she never predicted. Since then, she’s been on a mission to make sure family and caregiver voices shape the research, care, and policy that too often leaves them behind. And the hope? It lives in genetic testing that gives families a starting point. In advocates fighting for patient voices. In researchers who listen. In a next generation for whom the impossible is becoming possible. That’s why CureSHANK created Start Genetic. To connect families to answers through genetic testing. Her message is clear: "You'll move from overwhelmed to informed to empowered. Right now, just take the next step. Love the child that's in front of you." 🔗 Listen now: https://bit.ly/4m9Y2fa 💙 Learn more at startgenetic.org and cureshank.org @cureshank #RareDisease #RareConnection #PatientAdvocacy #GeneticTesting #RareDiseaseAwareness #RareDiseaseCommunity #RareDiseaseParent #DeNovo #GeneticCounseling

@cureshank is back #inthenews! Geraldine Bliss, founder of @StartGenetic and co-founder and president of CureSHANK, chats with Scott Douglas Jacobsen of A Further Inquiry about her relentless drive to advance SHANK3-related research and access to genetic testing. Read all about it here: /p/cureshank-founder-geraldine-bliss?utm_source=post-email-title&publication_id=675363&post_id=175561639&utm_campaign=email-post-title&isFreemail=true&r=qln7p&triedRedirect=true&utm_medium=email. #SHANK3 #GeneticTesting #GeneticResearch #StartGenetic #ResearchAdvancement

@geraldine_bliss president and cofounder of @cureshank and cofounder of @startgenetic recently sat down with Effie Parks, host of @onceuponagene.podcast , to discuss genetic testing, education, and advocacy. As Geraldine explains, “Getting a diagnosis doesn’t change who your child is — it changes what you can do for them.” Listen to the full podcast here: /podcast/startgenetic. #startgenetic #raredisease

Today is Genetic Testing Action Day-July 25. A day I wish I had known about in 2022, when we continued our journey of family planning, or even in early 2023, before we met our daughter Kaya face to face. Because this day might have helped us ask different questions. Questions no one told us we should ask. We did genetic testing in 2014. There were no genes of concern. No red flags. No reason to worry. But Kaya was born in 2023 with SPLIS, a rare condition caused by mutations in the SGPL1 gene. A gene that wasn’t even discovered until 2017. We didn’t know to test again. No one said that one test, one panel, might not be enough. This is why I speak up through Kaya Girl Legacy. Because science evolves. Genetic panels change. And what could be prevented — shouldn’t be missed. At birth, Kaya was 1 of 46 known cases in the world. Her story is rare. But the need to revisit your genetics is not. We share her legacy not just for what we lost, but for what might still be saved in someone else’s story. 🧬 So today, take action. Talk to your doctor. Ask about genetic testing , or retesting. Especially if your testing was years ago or before pregnancy. Visit StartGenetic.org Learn what’s changed. What’s possible. And what could matter for your future. #StartGenetic, for Kaya. For you. For every life still waiting to be seen. #GeneticTestingActionDay #KayaGirlLegacy #SPLISAwareness #GeneticHealth #TestAgain #RareDiseaseAwareness #GriefToPurpose #BecauseOfKaya 💛🪴💚

🧬 One test can change everything. Developmental delays? Autism? Intellectual disability? ➡️Genetic testing can reveal the why. And that one answer can unlock: ⭐️ Personalized care ⭐️ Access to clinical trials ⭐️ A clearer path forward You deserve more than guesswork— you deserve answers. 👉🏻 Start here: #StartGenetic #GeneticTesting #Autism #DevelopmentalDelay

📉 83% of people with autism may be missing out on answers. Genetic testing isn’t just a medical tool— it’s a powerful step toward clarity, support, and real solutions. 🧬 Let’s change the stats. 📍 Learn more at #StartGenetic #Autism #GeneticTesting

🧬Have you ever wondered if your Cerebral Palsy diagnosis left something out? You’re not alone. Many adults with CP may actually have a genetic condition that went undiagnosed for years. Now, science is catching up —and it’s revealing answers that could change everything. ✅Understand your symptoms more clearly ✅Explore tailored therapies ✅Plan for the future ✅Find a community that gets it Genetic testing isn’t about changing who you are. It’s about getting the care you deserve 🔗 #StartGenetic #CerebralPalsy #GeneticTesting #DevelopmentalDisabilities

1 in 3 people with autism may have a genetic cause. But only 1 in 6 ever gets tested. That gap? We can close it. 🧬 Let’s change the story — one test at a time. 🔗 #startgenetic #genetictesting #developmentaldisabilities #autism

🧠 30% of people with autism have a genetic cause behind their symptoms. But only 17% ever get tested. That’s a gap we can close — and we must close. Behind the behaviors might be answers. Answers that bring: 🔹 Clarity 🔹 Connection 🔹 Care that fits 🧬Let’s change the numbers. 🔗Learn more at: #startgenetic #genetictesting #autismawareness #developmentaldisabilities

🚨Genetic testing can change lives — but only if people know about it. Now through July 25, help us make some noise for Genetic Testing Action Day. 📣 Share Stories. 📣 Share guidelines. 📣 Share breakthroughs. Together, we can bring genetic testing into the mainstream — where it belongs. 🔗 #startgenetic #genetictesting #autismawareness #developmentaldisabilities

We’re parents. We’re providers. We’ve been where you are—and we created Start Genetic so others wouldn’t have to go it alone. 🧬Start here: #startgenetic #genetictesting #epilepsy #autismawareness #developmentaldisabilities