DownSyndrome Achieves

The National Down Syndrome Congress (NDSC) will host a webinar for Spanish-speaking and bi-lingual families on the importance of Down syndrome research, presented by DSA Diversity Outreach Committee member, Jeanette Cordova. Please share with your Spanish-speaking and bilingual friends and family! (This will only be available in Spanish.) WHEN: April 30, 2025 - 1 PM EST / 12 PM CST / 11 AM MST / 10 AM PST For many in the DS community, research is an important subject, but not everyone wants to participate in research. In this webinar, we will explore what is research, and why research is important to improving healthcare for people with DS and to the development of new treatments for health conditions related to DS. We will also learn how you can participate in research to make a difference. -- Para muchos en la comunidad con síndrome de Down, la investigación es un tema importante, pero no todos desean participar. En este seminario web, exploraremos qué es la investigación y por qué es importante para mejorar la atención médica de las personas con síndrome de Down y para el desarrollo de nuevos tratamientos para las afecciones relacionadas con el síndrome. También aprenderemos cómo puede participar en la investigación para marcar la diferencia. -- Register today here: https://lnkd.in/gZvkjd2b #downsyndrome #downsyndromelove #downsyndromeresearch #theluckyfew #downsyndromeawareness #nonprofit #research __________ At DownSyndrome Achieves, our goal is to bring families and researchers closer together to develop better, more effective treatments that improve health outcomes for people with DS and their families.

Lito Ramirez has held many impressive titles, including Press Secretary, Account Director, and Sr. Product Marketing Manager, among others. But the one that changed everything? Dad. The day Lito’s son, Cal, was born with Down syndrome, a new mission was set in motion. One that would lead to our organization, DownSyndrome Achieves, an organization dedicated to changing the future of Down syndrome research. What started as a personal journey has grown into something that has lasted more than a decade and transformed the lives of countless families. Watch Lito’s story unfold here: https://lnkd.in/gyBgV2P #nonprofit #research #health #downsyndrome #downsyndromeresearch __________ At DownSyndrome Achieves, our goal is to bring families and researchers closer together to develop better, more effective treatments that improve health outcomes for people with DS and their families.

When Maxwell was just a baby, his mother, Robyn, noticed something was off. He wasn’t responding to sounds the way his siblings did. He would turn his head inconsistently when she called his name, and there were moments she wondered if he could hear her. After multiple doctor visits, they got their answer. Maxwell had hearing loss due to fluid build-up behind his ears. This is a common condition in individuals with Down syndrome. Because of his genetically smaller ear structures, the fluid couldn’t drain as easily. The solution? Medical intervention. Over the years, Maxwell has undergone multiple sets of ear tubes and had his adenoids removed to help improve his hearing. Regular visits to his ENT every 6-12 months ensure that his hearing remains as strong as possible, allowing him to develop speech, connect with others, and engage with the world around him. Today, Maxwell is thriving. But a cold can still mean a longer recovery time than his siblings. Maxwell’s experience as a child with DS isn't unique. Individuals with Down syndrome often face higher risks for certain health conditions like hearing loss. But early diagnosis and the right treatment can change lives. That’s why continued research is so important. The more we understand these conditions, the better doctors can diagnose, treat, and improve the quality of life for people with DS. At DownSyndrome Achieves, we’re committed to making this happen. Through research initiatives like the DSA Biobank, we work to provide scientists with the biosamples they need to uncover better treatments not just for the DS community but for medical advancements that can benefit everyone. Are you a parent of a child with DS and have a similar story? DM us now, and let’s connect. #nonprofit #research #health #downsyndrome #downsyndromeresearch __________ At DownSyndrome Achieves, our goal is to bring families and researchers closer together to develop better, more effective treatments that improve health outcomes for people with DS and their families.

As parents, we always want what’s best for our kids. But when it comes to participating in medical research, how do parents of children with Down syndrome feel? A new study explored this question, and the results are eye-opening. The study found… Many parents of children with DS feel a strong responsibility to help others through research participation. At the same time, parents of children with DS are more skeptical about whether research will lead to discoveries in their child’s lifetime. These concerns may impact participation rates in clinical trials, meaning research could miss out on crucial data to improve healthcare for individuals with DS. So what’s next? When parents of kids with DS hesitate to participate in research, it affects the ability to develop better treatments, therapies, and health solutions. By understanding these unique concerns, researchers can improve communication, build trust, and make studies more inclusive. At DownSyndrome Achieves, we’re committed to bridging this gap. Our DSA Biobank initiative helps researchers overcome skepticism with transparency and real solutions, ensuring that every study includes the voices and needs of our community. Want to stay informed on important research like this? Subscribe to our monthly newsletter to get the latest news and insights on DS research happening today. Sign up here: https://lnkd.in/gD_VraYz #nonprofit #research #health #downsyndrome #downsyndromeresearch __________ At DownSyndrome Achieves, our goal is to bring families and researchers closer together to develop better, more effective treatments that improve health outcomes for people with DS and their families.

What if there was a future where scientists could better understand and treat the root causes of health conditions linked to Down syndrome? At DownSyndrome Achieves, we believe it’s possible. A recent study using CRISPR-Cas9, a powerful gene-editing tool, has shown for the first time that removing the extra copy of chromosome 21 in lab-grown cells is possible. This breakthrough could open the door to new medical insights and treatments for people with Down syndrome. It is a pathway to better understand Down syndrome, not ‘cure’ it. Scientists are still in the early stages. But this research could help us learn more about why people with Down syndrome are more likely to experience certain health conditions. It may also one day lead to new medical advancements. We’re hopeful for discoveries that could improve the health and well-being of people with Down syndrome. To read further, check out the details here: https://lnkd.in/gbTKsj9B *Study was published in the Journal of the Proceedings of the National Academy of Sciences (PNAS), PNAS Nexus, titled “Trisomic rescue via allele-specific multiple chromosome cleavage using CRISPR-Cas9 in trisomy 21 cells“ Read and leave us your thoughts in the comments below 👇 #nonprofit #research #health #downsyndrome #downsyndromeresearch __________ At DownSyndrome Achieves, our goal is to bring families and researchers closer together to develop better, more effective treatments that improve health outcomes for people with DS and their families.

Did you know that up to 18% of people with Down syndrome also have an autism diagnosis? April is Autism Awareness Month. And it’s a time to foster understanding and inclusion for individuals with autism spectrum disorder (ASD). While Down syndrome and autism are distinct conditions, they can overlap in ways that impact communication, behavior, and sensory processing. This dual diagnosis can sometimes be overlooked, making it essential for families and medical professionals to recognize the signs early and provide the right support. Those diagnosed with DS and ASD can… - Find it really hard to engage socially - Exemplify repetitive behaviors - Take longer to process cognitive thoughts At DownSyndrome Achieves, we’re committed to advancing research that helps families and doctors better understand the unique health challenges faced by individuals with Down syndrome, including how conditions like autism affect their development, learning, and overall well-being. Why does this matter? Because better research leads to better resources, better treatments, and ultimately, better outcomes for individuals with Down syndrome and autism. As we recognize #autismawarenessmonth, join us in pushing for the research, education, and advocacy needed to ensure every individual gets the support they deserve. Were you surprised by this statistic? #nonprofit #research #health #downsyndrome #downsyndromeresearch __________ At DownSyndrome Achieves, our goal is to bring families and researchers closer together to develop better, more effective treatments that improve health outcomes for people with DS and their families.

For researchers studying Down syndrome, obtaining enough samples to do research at the bench can be a major roadblock. The time, resources, and administrative hurdles involved in outreach, engagement, and recruitment of participants can delay studies by years before a single sample is even analyzed. At DownSyndrome Achieves, we aim to help with this effort. Here’s how: ✅ No Need for Direct Recruitment We handle outreach and engagement, ensuring a diverse and sufficient number of biospecimens from individuals with Down syndrome. ✅ Broadly consented Samples Instead of navigating complex IRB approvals for participant engagement, researchers can focus solely on their study design and sample analysis. We will send the samples to you. ✅ Faster Access to Samples With our DSA Biobank, investigators skip years of patient recruitment and gain immediate access to high-quality biospecimens, accelerating discovery timelines. By reducing the time it takes for you to get samples and removing these administrative barriers, we empower researchers to spend more time at the bench and less time on recruitment. Let us help you discover impactful breakthroughs for the Down syndrome community. To learn more about how we can help move your DS research study forward faster, send us a message here on LinkedIn or email us at dsabiobank@dsachieves.org #nonprofit #research #health #downsyndrome #downsyndromeresearch __________ At DownSyndrome Achieves, our goal is to bring families and researchers closer together to develop better, more effective treatments that improve health outcomes for people with DS and their families.

What does the day in the life of a researcher look like? We asked a fellow researcher and Principal Investigator for DSA Biobank, Nicole White, PhD, MBA, this question, and the short answer… It depends. We know your time is often spent on… - Applying for grants funding - Writing publications - Managing research protocols - Recruiting research participants. At DownSyndrome Achieves, we understand this, and here’s how we can help. DSA can help alleviate some of the administrative burdens that take up too much of your time and prevent you from doing what you were trained to do: research. Learn how we can help you move your DS research study forward faster by sending us a message here on Linkedin or by emailing us at dsabiobank@dsachieves.org. #nonprofit #research #health #downsyndrome #downsyndromeresearch __________ At DownSyndrome Achieves, our goal is to bring families and researchers closer together to develop better, more effective treatments that improve health outcomes for people with DS and their families.

Advocating for DS research never stops. Even though #worlddownsyndromeday has passed, all of us at DownSyndrome Achieves continue to advocate for DS research. And there’s one critical element that makes research possible we must mention… Biobanking. Biobanks store biosamples —anything from blood, tissue, and plasma (to name a few). These samples are housed in our DSA Biobank at Cincinnati Children’s Hospital. If you’re a researcher looking to study Down syndrome and related health conditions, email us at dsabiobank@dsachieves.org to learn how we can help move your DS research study forward faster. #nonprofit #research #health #downsyndrome #downsyndromeresearch __________ At DownSyndrome Achieves, our goal is to bring families and researchers closer together to develop better, more effective treatments that improve health outcomes for people with DS and their families.

Thank you. 3/21 #worlddownsyndromeday has come and gone. But at DownSyndrome Achieves, we want to thank ALL those who gave to support our mission of advocating for DS research. With research, we know our loved ones with DS can experience fewer health complications in the future. Health complications associated with…. Congenital heart defects Pulmonary hypertension Celiac disease Hearing loss Vision problems Obstructive sleep apnea That’s why we’re doing what we do…to help them live healthier lives. 3/21 may be over for this year, but this global movement promoting awareness, advocacy, and inclusion for individuals with Down syndrome never stops. Your efforts in helping us raise funding for DownSyndrome Achieves are sincerely appreciated! If you want to learn more about our organization, please check out dsachieves.org. #nonprofit #research #health #downsyndrome #downsyndromeresearch __________ At DownSyndrome Achieves, our goal is to bring families and researchers closer together to develop better, more effective treatments that improve health outcomes for people with DS and their families.