Rebekah Pagis’ Post

📣 Exciting news: I'm a featured writer in this incredible book. We are raising funds to publish an empowering book of stories from the rare disease community. 📘 Introducing Positively Rare: a collection of twenty-five first-person stories that shed light on the experiences of those searching for a diagnosis, facing medical gaslighting, and living with medical PTSD. 🌟 These stories showcase the resilience and determination of individuals who have discovered new passions, changed careers, and built families post-diagnosis. From parents and caregivers to scientists and genetic counselors, this book represents the diverse voices within the rare disease community. 👥 We aim to eliminate the fear and stigma associated with rare diseases by amplifying their collective voice. This book has the power to change lives! Join us as a donor or sponsor to make a difference. Any contribution, big or small, will be greatly appreciated. Plus, don't forget to share this opportunity with your friends, family, and colleagues! Together, we can spread these life-changing stories to those who will benefit. 🤝 🔗 To donate, please click on the GoFundMe link below. (You can select me, Jen, as your team member). Let's make a positive impact together. Can we count on you? https://lnkd.in/d8UtucQj #RareDisease #rarediseaseawareness #PositivelyRare##EmpoweringStories #featuredwriter #MakingADifference #support

I can’t believe it’s been almost been 5 years since I lost my sister to Rett Syndrome. This is genuinely really tough for me to talk about, especially in a public forum. I miss my sister, Ashley, dearly, and wish I could see her again. Please consider signing up for our 5th annual virtual 5K (walk, wheel, or run) we hold in her honor, and make any donation you can! All proceeds will go to the Rett Syndrome Research Trust (RSRT) to accelerate research for a cure. With this annual event, we hope to spread awareness and raise funding for research to finally cure this thing once and for all. I hope that with accelerated research we can help the families that still have time. Please repost to share with you network! For those who aren’t aware, Rett syndrome is a rare genetic disorder that primarily affects girls. It causes severe impairments in brain development, leading to difficulties in movement, communication, and cognitive abilities. Imagine a condition where a child gradually loses abilities they once had, such as hand skills and speech, and faces challenges in everyday activities like walking and interacting with others. It's like a puzzle where pieces of development are missing, making life more challenging for both the affected individual and their caregivers. #rettsyndrome #rsrt #5k #researchforacure #rettsyndromeresearchtrust #donateforacause #virtual5k

Personal Post Meet my daughter Claire. Claire is 4 years old and suffers from a rare condition known as Tuberous Sclerosis Complex or TSC for short. TSC is a rare genetic disorder characterized by the formation of benign tumors in various organs, including the brain, kidneys, heart, lungs, and skin. This disease can cause a range of symptoms and complications, such as seizures, developmental delays, intellectual disability, skin abnormalities like facial angiofibromas as well as kidney and lung problems. While there is no cure for TSC, treatment focuses on managing symptoms and complications to improve quality of life. Our journey with this disorder started before Claire was born when we noticed a few tumors on her heart. These tumors had no impact on her heart function, but were an early indicator that she could have TSC. After birth, we conducted a scan of her brain to confirm the diagnosis when multiple tubers (the benign tumors in the brain) were found. We enrolled Claire in a clinical trial aimed at preventing the onset of seizures but unfortunately Claire had her first seizure at four months old. Luckily being involved in the clinical trial allowed Claire to start a seizure medication almost immediately. At 19 months Claire, after having a previous diagnostic focused brain surgery 2 months prior, had a plum size tuber removed from her left temporal lobe. At four years old now, Claire has only had one seizure due to illness. She has recently graduated from physical and speech therapy and her seizure medication drastically reduced. While Claire’s story is still being written but one of success, we fully realize not every child is as lucky and not every family is blessed to have the support and resources to tackle this disorder head on. With that, we annually raise money for Team Claire which goes 100% to the TSC Alliance (link provided below for donations). This goes towards research and support for other children like Claire. Feel free to share and repost this message for awareness. Early detection is key, so if this message can help one child or one family, you have no idea the impact it could have on their life. https://lnkd.in/gRk4Gx_b #TeamClaire #TSCWarriors #TSC

For World Down Syndrome Day 2024, people worldwide are called on to End The Stereotypes!! World Down Syndrome Day serves as a platform to dispel stereotypes and promote awareness of the needs and rights of individuals with Down syndrome. Through unified advocacy efforts, it empowers the global community to embrace diversity, foster inclusion, and ensure the well-being of individuals with Down syndrome. World Down Syndrome Day is marked each year on 21st March. The date was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome. Visit worlddownsyndro#WorldDownSyndromeDay2024 ID: MACS blue poster with MACS 30th balloon logo in the top, left corner. The World Down Syndrome Day logo is in the top right corner. The title of the poster is in white text and reads 'Happy World Down Syndrome Day 2024'. An illustration of nine yellow and blue socks, all with different patterns, hanging on a string line runs along the bottom of the poster. #charity #microphthalmia #visualimpairment #macs #coloboma #anophthalmia #raisingawareness #endthestereotype #EndTheStereotypes #downsyndrome #downsyndromeuk #worlddownsyndromeday #WorldDownSyndromeDay2024

🌟 Exciting News! 🌟 I'm thrilled to share that I've contributed a chapter to an inspiring book titled "Positively Rare." My chapter delves into the power of vulnerability, the bravery required to face pulmonary hypertension (PH), and the boundless strength of hope. 💜 This journey is more than just words on a page; it's an open invitation to connect with those silently struggling, offering a hand to hold and a story that resonates. 🤝❤️ I'm reaching out with a unique request: Could you donate a dollar to everyone you know with a rare disease? Even a single dollar makes a difference! Then, please SHARE this message to amplify our voice. 🙏 https://lnkd.in/dzNSidbe Together, we can create a record-breaking movement to cover the publication costs, symbolizing the vast and supportive community surrounding rare diseases. "Positively Rare" is more than a book; it's a collective narrative from patients, caregivers, scientists, and advocates, each sharing a unique, life-changing perspective on rare diseases. Let's spread awareness, foster support, and enhance understanding one chapter at a time. 🌍💖 #RareDiseases #PositivelyRare #Hope #CommunitySupport #Awareness #Warriors #donate #lifechanging #pulmonaryhypertension

This year Australia will set an alarming record for the highest number of prostate cancers diagnosed in our nation’s history. More than 25,000 men will be diagnosed - at a rate of 70 men each day. We are the only national charity exclusively dedicated to funding life-changing research, awareness and support for men and their families impacted by the disease. Go Dry this July for PCFA so that all men and families have the support of PCFA. https://lnkd.in/g6bSKRVk Your donations are life-changing $25 gives a newly diagnosed man a tailored information pack to help explain the road ahead. $50 covers the cost of screening a newly diagnosed patient for depression and anxiety, ensuring he is referred for mental health support. $100 can cover the cost of follow-up care and support, so that men and families have consistent care throughout their treatment. $250 helps cover the cost of a community awareness presentation, so we can educate Australian men about genetic and family risks. $500 covers the costs of training a new nurse on the harsh side-effects of treatment, so we can help men through their toughest challenges. Today your donations will be matched $ for $ so a double whammy. We can do this to help all our Men ! 🙏🏻 https://lnkd.in/g6bSKRVk

Hope for Hypothalamic Hamartomas is excited to announce today is the start of International Hypothalamic Hamartoma (HH) Awareness Month. #HHAwareness We ask that you, our Hope for HH community, embrace this international awareness initiative throughout September. Help spread awareness throughout your social networks and ensure this rare syndrome is known outside the HH community. Working together we'll ensure those with HH continue to have a voice for improved care, treatment, and research funding! What is Hypothalamic Hamartoma Syndrome? Hypothalamic Hamartoma (HH) Syndrome is a complex ultra-rare disease that involves a brain tumor/lesion and a spectrum of comorbidities. This syndrome is estimated to impact 1 out of 200,000 worldwide. Although generally characterized by rare gelastic (laughing) seizures, those living with HH understand it is more than an epilepsy syndrome. The comorbidities associated with HH include endocrine dysfunction, psychiatric conditions, cognitive impairment, and sleep disturbances. Working together with the HH community we can impact those living with this complex and rare syndrome by raising awareness, educating our communities, and pushing for more research. Learn more on our website: https://lnkd.in/gWp2T-vz Please consider donating today to help improve the lives of those living with HH. DONATE today ->  + Give through our GiveButter campaign - https://lnkd.in/gTRmqHJ7 +Give through our website - https://lnkd.in/gGfrFFHE #HHawareness #InternationalHHAwareness #ChooseHOPE #FightingForRare #StrongerTogether #HopeForHH #ShareYourStory #YourStoryMatters #Give #Hope #HypothalamicHamartoma #braintumor #gelastic #seizures #obesity #rages #RareDisease #ChronicDisease #Epilepsy #Seizures

💜 August is SMA Awareness Month! 💜 Spinal Muscular Atrophy (SMA) affects 1 in every 11,000 babies born and is a genetic disorder that impacts the motor nerve cells in the spinal cord. It leads to muscle weakness and atrophy. Raising awareness helps in: 🟣 Early Diagnosis: Early detection can significantly improve the quality of life through timely interventions and treatments. 🟣 Support & Resources: More awareness means better support systems and resources for families affected by SMA. 🟣 Research & Funding: Increased awareness drives research and funding towards finding better treatments and, ultimately, a cure. How Can You Help? 🟣 Educate Yourself and Others: Learn more about SMA and share your knowledge. Participate in Events: Join local and virtual events to show your support. 🟣 Donate: Consider donating to organizations dedicated to SMA research and support. Together, we can make a difference! 💪 Let's spread the word and support those affected by SMA. Share this post and use #SMAAwarenessMonth to show your support. For more information please follow CureSMA at https://lnkd.in/ggB_TmP4

Sickle Cell Awareness Month September is here, and it's time to shine a light on a condition that affects millions worldwide—Sickle Cell Disease (SCD). This genetic blood disorder can cause severe pain, fatigue, and a host of other complications, yet many people still don’t know much about it. ✨ **Get Involved:** 1. **Educate Yourself:** Learn more about SCD. Knowledge is power! 2. **Spread the Word:** Share this post, talk to your friends and family, and help us amplify the voices of those living with SCD. 3. **Support Organizations:** Consider donating to or volunteering with organizations dedicated to SCD research and support. Every little bit helps! 4. **Wear Red:** Show your support by wearing red during September and sharing your photos with #SickleCellAwareness! Together, we can make a difference! Let’s raise our voices and spread awareness for those living with Sickle Cell Disease. 💪💙 #SickleCellAwareness #SickleCellDisease #EndSickleCell #HealthAwareness #enddomesticviolence #endsexualviolence #reintegration #hivaidsawareness #housingfirst #communityresource #nonprofit #newjersey #njac_helps