Great Ormond Street Hospital Charity’s Post

For those who may not be aware, my son Macario was born last year with a diagnosis of Trisomy 21, commonly known as Down syndrome. Since receiving this diagnosis, we've been exploring ways to uplift this incredible community. One of the most impactful actions you can take is to support our team, 'Mac and Cheese', at the Buddy Walk. Why I Walk: The CHOP Buddy Walk® is the sole fundraiser for the Trisomy 21 Program: CHOP’s Trisomy 21 Program, which cares for more than 1,200 children and 300 adults annually, would not exist as it does today without the tremendous support of the CHOP Buddy Walk® & Family Fun Day. The CHOP Buddy Walk® provides hope for tomorrow for children with trisomy 21, also known as Down syndrome, the most frequently occurring genetic syndrome in the United States. One in every 800 children are born with Down syndrome, and they often face an uncertain future. These children are at greater risk of developing chronic and life-threatening conditions such as heart disease, bone deformities, neurological, gastrointestinal and endocrine disorders, as well as feeding and developmental disabilities. How Can You Help? By donating and helping me support: •   Ongoing clinical care and coordination for children and adults with Down syndrome and their families •   New assessment tools to identify potential issues and intervene early •   Continuing education for families, medical providers and community members •   Transformational research to improve the quality — and quantity — of life for individuals with Down syndrome •   With your support, babies born with Down syndrome can experience the many joys of childhood — and flourish in adulthood. Whether you're in Philly or far away, there's a spot just for you! So, put on your walking shoes, or simply click to support. For my son Macario, for every child, and for a future filled with understanding, love, and boundless possibilities. Join My Team https://lnkd.in/eaF7XDWb Donate to my Team https://lnkd.in/eGxsxDDG Donate through Facebook https://lnkd.in/eaU7XYeE Event Details https://lnkd.in/eRUV9eUH See you there– in spirit or stride! P.S. Don’t forget to share this with friends and family. The more, the merrier!

Celebrating Extraordinary Dads! Another reason, I love doing what I am doing in the space of Diversity, Equity and Inclusion - the people I get to meet! I am profoundly moved to share the inspiring story of Barry Mone, an exceptional father who exemplifies unwavering love and resilience in the face of adversity. His journey as a pillar of strength for his son - Charlie, who battles Duchenne Muscular Dystrophy (DMD), is a testament to the power of love, compassion, and determination. I met Barry through LinkedIn and we further connected over his endless efforts to raise awareness about DMD. In the face of the challenges that come with DMD, Barry and his family have not only become a tireless advocate for raising awareness about this rare genetic disorder but has also demonstrated unparalleled commitment to ensuring Charlie lives life to the fullest. From attending medical appointments to exploring innovative treatments and therapies, Barry has become a beacon of hope for families navigating similar paths. His dedication goes beyond the medical realm. Barry actively fosters a supportive community, sharing insights, resources, and emotional support with other parents facing similar challenges. Through his advocacy efforts, he shines a light on the importance of research and the urgent need for advancements in the treatment of DMD through his non-for profit Charlies Hope. Read more about Charlies Story below. It’s no wonder Charlie is continuing to smile and soldier on through adversity – he has his fathers strength and motivation supporting him through. https://lnkd.in/dt36Qe9p Let's take a moment to salute Barry. Your story is a source of inspiration, reminding us of the profound impact that love and advocacy can have on the lives of those affected by rare diseases. Your strength is changing the narrative for families affected by Duchenne Muscular Dystrophy. #DuchenneAwareness #InspiringDads #UnyieldingLove #RareDiseaseAdvocacy

🌟 Will you and your company help us spark greater awareness about epilepsy? 🌟 This November is National Epilepsy Awareness Month and we all our supporters to #Spark4Epilepsy. Join us in spreading awareness and reducing stigma often associated with seizures and epilepsy by helping spark conversations about epilepsy. 💡 Learn more about how to get involved and get ready for 1 November: https://loom.ly/KVHMZ6E #Epilepsy #EpilepsyAwareness #EpilepsySupport

💜 World Epilepsy Day - Bluebird Care Stands in Support 💜 Today marks World Epilepsy Day, a day when Bluebird Care joins the global community in raising awareness about epilepsy. It's a time to educate, to share stories, and to amplify the voices of those affected by epilepsy. Let's shed light on the challenges and triumphs in the journey towards understanding and managing epilepsy. Together, we advocate for acceptance, improved care, and a world of understanding. 💪 #WorldEpilepsyDay #Awareness #Support #BluebirdCare"

💜 World Epilepsy Day - Bluebird Care Stands in Support 💜 Today marks World Epilepsy Day, a day when Bluebird Care joins the global community in raising awareness about epilepsy. It's a time to educate, to share stories, and to amplify the voices of those affected by epilepsy. Let's shed light on the challenges and triumphs in the journey towards understanding and managing epilepsy. Together, we advocate for acceptance, improved care, and a world of understanding. 💪 #WorldEpilepsyDay #Awareness #Support #BluebirdCare"

As summer draws to a close, most families anticipate the return to school with excitement and mild trepidation. The anticipation of new classes, new teachers, and time with friends, while daunting, is something parents know their children will navigate successfully. For other children, like my son Nate, who have bipolar disorder (BPD), and its subvariant condition, thermoregulatory fear of harm (FOH), this moment can be paralyzing. Past failures, academic defeats, extended periods of instability, burned bridges with peers, and misunderstood interactions with teachers present a sense of dread and barriers that seem insurmountable.   This does not have to be the case. Over the last twenty years, the Juvenile Bipolar Research Foundation has exponentially expanded our understanding of BPD and FOH and has developed treatments that are bringing a sense of peace, normalcy, and success to our children that they have never before experienced. These treatments are improving, and at times saving, the lives of so many children. That said, we still have much more work to do: we have much more to learn and discover, we have treatments yet to be tested and developed, and we have knowledge that we desperately need to disseminate. There is still a startling lack of understanding throughout clinical circles that BPS and FOH occur in childhood, that they can be recognized as early as six years old, and that they can successfully be treated. You can help us change this.  We need your help so that we can accelerate these efforts and make a difference now. Please visit our website to learn more, or consider making a tax-deductible gift online at www.jbrf.org Thank you, Jim Ayres Executive Director

Blitz Blog – World Down Syndrome Day is 3/21   Welcome back to the Blitz Blog. Did you know that March 21 is World Down Syndrome Day? Some of you may be asking, why March 21? When we put the month as a number, we get 3/21. And Down syndrome is most commonly caused by 3 copies of chromosome 21 (instead of 2). Pretty clever, I think. World Down Syndrome Day (https://lnkd.in/gSAWYNSE) is a global day of awareness, officially observed by the UN since 2012. Read about this year’s theme End The Stereotypes (https://lnkd.in/gaT9XEKa) to learn about stereotypes and how they negatively impact individuals with Down syndrome. For all of you Barbie fans, Mattel introduced the First Barbie® Doll with Down syndrome on April 25, 2023 – another step to increasing representation in the toy stores! (https://lnkd.in/g97wDqXn) Here are some organizations that support individuals with Down syndrome and their families: -      Jack's Basket – Celebrating babies with down syndrome (jacksbasket.org) o  Jack’s Basket is a 501(c)3 nonprofit organization with a mission to celebrate babies with Down syndrome. We strive to ensure that every new and expectant parent is provided resources and avenues of support within the community. We aim to equip medical providers with tools to discuss the diagnosis in an unbiased way in hopes that having a baby with Down syndrome is celebrated like any other. -      Lots Of Socks campaign - World Down Syndrome Day o  Get people talking about Down syndrome by wearing your most eye-catching socks. Believe it or not, socks get people talking! (https://lnkd.in/gcvcMX-3) -      National Down Syndrome Society (NDSS) o  NDSS empowers individuals with Down syndrome and their families by driving policy change, providing resources, engaging with local communities, and shifting public perceptions.  -      Global Down Syndrome Foundation (https://lnkd.in/gcZ6kTpj) o  The Global Down Syndrome Foundation is dedicated to significantly improving the lives of people with Down syndrome through Research, Medical Care, Education, and Advocacy. -      National Down Syndrome Congress (https://lnkd.in/gTvqE7aN) o  Founded in 1973, this is a national resource of support and information for anyone touched by or seeking to learn about Down syndrome, from the moment of prenatal diagnosis through adulthood. The NDSC offers programs for families and professionals and resources on a wide array of topics,    And let’s not forget, the American Academy of Pediatrics (AAP) Parent website: -      Children with Down Syndrome: Health Care Information for Families - HealthyChildren.org -      AAP Updates Recommendations for Care of Children with Down Syndrome - HealthyChildren.org -      Health Supervision for Children and Adolescents With Down Syndrome | Pediatrics | American Academy of Pediatrics (aap.org)   Happy reading and learning! #worlddownsyndromeday

🟣 "Shine a Light on Epilepsy: Celebrate Purple Day!" 🌟 Join us in raising awareness for epilepsy on Purple Day! Let's come together to show support for those living with epilepsy and spread knowledge about this neurological condition. 💜 Spread Awareness: Share this flyer with friends, family, and colleagues to spread awareness about epilepsy and Purple Day. Wear purple on Purple Day to show your support and solidarity. Together, let's shine a light on epilepsy and empower those living with the condition! 💜🌟 #PurpleDay #EpilepsyAwareness

We lost our beautiful daughter Amber to SUDEP last year. She was just 22 years old - talented, funny, kind and caring, and just starting to find her way in the world, after years of suffering seizures regularly throughout her teens. Through that whole period, not one Consultant, GP or specialist nurse told us of the phenomenon that ultimately took Amber’s life. If they had she might still be with us today. This week we launched our 600 for 600 Challenge - 600 minutes of additional walking, cycling, running or swimming by team members, for every single day in July.   We’re doing it to raise awareness of SUDEP (sudden death in epilepsy), a condition which affects 1 in 1,000 epilepsy sufferers, and leads to 1,200 deaths every year, mainly in young adults. Half of these are thought to be preventable with increased awareness and education. It wasn’t until after Amber’s death that we became aware of SUDEP Action, an epilepsy charity which is doing everything it can to spread the word. They are calling for more open discussions by clinicians around SUDEP, so patients are in possession of all the facts, and aware that striving for full seizure control is crucial. They have been incredibly supportive at a distressing time, and we plan to help them, keeping Amber’s name alive at the same time. How can you help? This is a cause where AWARENESS really does matter. So, if you see our challenge content over the coming weeks please engage and encourage, and let’s get SUDEP noticed.

Today is 26th March - Purple Day which is the biggest international fundraising campaign for individuals with Epilepsy. A little background on Purple Day: ‘Purple day was created in 2008 by Cassidy Megan, a young girl from Canada, who has epilepsy and wanted to get people talking about the condition. Cassidy decided to use the colour purple because lavender is recognised as the international flower of epilepsy. Cassidy not only wanted to raise awareness but also assure people with epilepsy that they are not alone…’ I have linked the article if you wish to read more. Purple day is the biggest chance in the year to spread the word about how important it is to understand Epilepsy. By raising awareness we are eliminating the stigma and fear associated with Epilepsy. A year ago I was uneducated on the condition and I realised I never actual knew what Epilepsy was and the reason was solely due to me not being exposed to it and that comes down to there not being enough awareness about it. In a short space of time Epilepsy has become something close to my heart and I have taken time to educate myself on the condition so I can be there for a loved one but also support anyone with it. From learning how to react to when someone is seizing to being able to read scans. Moments of such have allowed me to realise the importance of educating myself in aspects of life even if they do not impact me personally and I will continue to educate myself on anything and everything - whenever I can. This post is for anyone with Epilepsy or knows a friend or family member who suffers from Epilepsy. But it is also for anyone who wants to educate themselves about the condition. This is a way of showing children, young people and adults with Epilepsy that they’re not alone! With technology developing rapidly, ongoing research and amazing volunteering opportunities such priceless information is being obtained on the condition. Finally, I am so excited to be soon working voluntarily with Epilepsy Action to make a difference in people’s lives. I will be wearing purple - I hope you all have something purple on to show your support 💜 Much Love Article: