University of Rochester’s Post

Partners in PROMISE would like to recognize National Fragile x Awareness Day. 📢What is Fragile X? ✨Fragile X is a group of conditions associated with alterations in the FMR1 gene on the X chromosome. These changes result in a “premutation” which can lead to Fragile X-associated conditions and disorders – like Fragile X-associated tremor/ataxia syndrome, or Fragile X-associated primary ovarian insufficiency – or a “full-mutation” which causes Fragile X syndrome. 📢Special Education  ✨ Address needs and strengths in ALL areas to include educational, social/emotional/adaptive, physical motor/health, communicative, cognitive, and transition/life skill/career. This is a great article that specifically addresses Fragile X IEP support: https://lnkd.in/ezPmiWVQ 📢How To Observe National Fragile X Awareness - Celebrate the families impacted by Fragile X. Show your support by learning more about Fragile X. Other ways to participate include: ✨Families, download and print Fragile X awareness cards. ✨Donate to support research. ✨Attend webinars or seminars about Fragile X. ✨Host an event on social media. ✨Organize a fundraiser. ✨Join a support group. ✨Share your experiences. When you share make sure to share #FragileXAwarenessDay on social media! #FragileXAwarenessDay #MilitaryChildren #MilitaryFamilies #EFMP

A personal update: this weekend I gathered with friends to celebrate a life cut short by our disastrous health system. Maggie Rossman lost her life at 39 following complications during childbirth, after an incident free pregnancy. She left behind a beautiful baby and grieving family. Her death has touched so many of us - she died in a state deeply impacted by legislation that is known to impact the availability of medical professionals, the care the few providers can provide, and the attitude of the entire system on people with uteruses. In another state, in another time, Maggie could be raising her healthy 8-month old baby. Maggie is one of likely thousands of women who did not survive this anti-public-health environment. Recent studies have been quantifying this devastating impact - "mothers living in a state that banned abortion after Dobbs were up to 3x as likely to die." As we continue to see a steady rollback of science-based policy and politicization of public-health, we will continue to see tragic preventable deaths. For all of you with birthing people in your lives, hold them close and do whatever you can to help them survive this horrific time, especially if they are in a state that is banning access to healthcare. Further reading: https://lnkd.in/gaFQMjuv https://lnkd.in/gvvA3Vrc https://lnkd.in/gfXxeSDK https://lnkd.in/gi7SGh2x Kheyfets, A., Dhaurali, S., Feyock, P., Khan, F., Lockley, A., Miller, B., & Amutah-Onukagha, N. (2023). The impact of hostile abortion legislation on the United States maternal mortality crisis: a call for increased abortion education. Frontiers in public health, 11, 1291668. https://lnkd.in/geP_hJKT

Is your child between ages 3 and 5? Join us on a mission to revolutionise the way we understand and support children's developmental health. We're thrilled with the rapid progress of our latest MHRA-approved clinical trial, and we're inviting your little ones to be a part of this groundbreaking journey! 🔍 Why Join the Brightlobe Trial? 🧠 Pioneering Science: Our platform is built on cutting-edge research, aiming to provide unparalleled insights into children's cognitive and emotional growth. 🌱 Long-term Benefits: By participating, your child's school will have access to tools and resources that can positively shape their developmental trajectory. 🤝 Community Impact: Your involvement will contribute to a larger cause, helping us refine our tools and make them accessible to children worldwide. We believe in a future where every child has the opportunity to thrive, and with your help, we can make that vision a reality. 👉 Learn more and sign up for the trial: www.brightlobe.com/science #clinicaltrials #neurodevelopment #children #autism #adhd

Understanding the deep, complex roots of the challenges communities and individuals face is essential to systems change. Here are five research-driven ways that funders can do that work. Stanford Social Innovation Review https://lnkd.in/giKDCGyg #healing #change #philosophy #funding

Tips for Caregivers of Loved ones living with Dementia. If you are looking for expert dementia help, you may find it in one of the providers below. TYPES OF PROVIDERS Geriatricians - this is a medical doctor with expertise in geriatrics. Since geriatrics (ages 65 and over) is their specialty, they are likely to understand dementia more than a typical medical doctor or physician. Gerontologist - this is similar to a geriatrician, but sometimes they may be more research and academic focused. Neurologist - A neurologist who sees older patients will likely have expertise in the different types of dementia and the different treatment options available. Neuropsychologist - This is a clinical psychologist with specialty in the brain. This is the person who usually does the in depth testing to see if someone has dementia. If a neuropsychologist sees older adults, then they likely have expertise in dementia. Geropsychologist - This is a clinical psychologist who specializes in working with older adults. They typically do cognitive testing to see if someone is having problems with their thinking. They also provide therapy and counseling services to older adults and their family members. Follow My Natural Me www.mynaturalme.org To learn more about our Dementia Caregivers Support Program #caregiversupport #nationalfamilycaregiversmonth

Friends, Tis the season for giving! As many of you know, I am the President of the Board of Directors for Wonderland Child & Family Services. Each fall we hold a big fundraising campaign called Season of Wonder. I am reaching out to ask you to please help me reach my fundraising goal of $20k this year by donating at the link below.   About Wonderland: Since 1969, Wonderland has been providing therapeutic services and family resources to families in need regardless of their ability to pay throughout the North Seattle area. We have two very popular programs: Early Supports: provides a variety of in-home services to children from birth to 3 years old who are living with developmental delays - My youngest son Arlo was an Early Supports kid and he just "graduated" from speech therapy in June of this year. Prior to seeing a speech therapist, he had a language delay and had very few spoken words...now we can't get him to shut up 🙂. His growth in verbal communication skills has greatly improved quality life for him and for Mom and Dad.  In the first 6 months of 2023, Early Supports has increased monthly enrollment to 415 kids compared to 360 in 2022. With your help we can continue to grow and help more families in our community. Hope Rising Clinic: provides a variety of services for children birth to 13 years old who are living with the after-effects of prenatal substance exposure (PSE) and fetal alcohol syndrome (FASD). Prenatal substance exposure is the leading cause of developmental delays in children, yet it is not well known and not talked about or studied enough. There is a lot of stigma in our society around the issue - we're not here to shame anyone - we're here to help level the playing field for the kids out there living with this condition. Hope Rising Clinic opened in 2019 and has not yet been able to grow fast enough to meet the needs in our community. Funding from grants, insurance, and government has been a big barrier to this, so we really need support from individual donors like yourself to meet the needs of these kids. In the first 6 months of 2023, HRC has increased total enrollment to 114 kids compared to 91 in 2022. In May, the Washington State Governor signed into law House Bill 1168 sponsored by Wonderland, which paves the way to state government funding for prevention services, diagnoses, treatment, and support for PSE. It's an amazing step in the right direction for the kids at HRC, but the funding moves at the pace of government and is not enough to cover the gap we need to satisfy the demand at HRC. We still have almost 100 kids on the waitlist and we need your help to fund this desperately needed program.   Because we're a small and mighty organization we're able to maintain a very high ratio of spending on programs vs overhead (85% of money raised from fundraising goes directly into programs - only 15% is overhead and admin).   https://lnkd.in/gYtvh3FW

Healing has to be a global priority if we truly want a more just, caring society. Philanthropy has a role critical role to play in supporting healing-centered efforts, prioritizing those who are furthest from opportunity. How can funders work from a broader perspective? New models that address systemic disparities are making a difference in communities, but funders sometimes struggle to support them within the existing paradigms they use to evaluate organizations. In the latest from SSIR, Shruti Jayaraman of Chicago Beyond outlines five practical shifts funders can make to expand their perspectives, do less harm, and have a greater impact: 1️⃣ Widen the funding perspective 2️⃣ Expand institutional knowledge and metrics 3️⃣ Fit funding processes and terms to purpose 4️⃣ Make risk analysis whole 5️⃣ Learn and be accountable https://lnkd.in/giKDCGyg

I need your help Could you help me share this in the community Donation page "Urgent Help Needed! My son, Joseph Santiago, is a miracle baby who has been bravely fighting against asthma (J45.909) and PTSD (F43.101) since he was eight months old. He's been through three asthma attacks and a mild stroke, and his condition has been exacerbated by asbestos exposure in our apartment. *Introducing the Brain-Stimulating Car Seat Stroller* As a parent and inventor, I created a revolutionary car seat and stroller to help children like my son, Joseph, who suffers from asthma and PTSD. This innovative device provides brain stimulation to help cure illnesses, develop motor skills, and burn calories. *The Problem:* Many children spend extended periods in car seats, which can hinder their development and exacerbate health issues. *The Solution:* My car seat stroller combines safety, comfort, and brain stimulation, featuring: - A built-in pedal system for kids to exercise and burn calories - A high-chair conversion for mealtime and play - A brain-stimulating activity center for cognitive development *Your Support:* Please donate to help fund the production and distribution of this life-changing invention. Your contribution will: - Support children with illnesses and developmental challenges - Help parents like me provide better care for their kids - Fund research and development for new features and innovations *Donate Now:* ajosawareness.com (https://lnkd.in/eWQJKs3h) *Let's Make a Difference Together!* However, I urgently need your help to make this invention a reality and provide Joseph with the care he deserves. Please consider supporting us through our donation page: (https://gofund.me/8310f827 (https://gofund.me/8310f827)) Every little bit counts, and your generosity will bring hope and healing to Joseph's life. Your support will go directly towards: - Funding the production of the operated car seat stroller - Covering Joseph's medical expenses and therapies - Advocating for safe and healthy living conditions Let's come together as a community and support each other in times of need. Share this post, spread the word, and let's make a difference in Joseph's life! #JosephsJourney #HealingForJoseph #SupportSmallInventors"

The work of dismantling racism and inequality must be not only in protests, polls, donations, economic investment, education, and reform, but also at home with our families. However, it might feel like the path to community engagement is clearer than the path of how to talk to our children about difficult topics like racism, racial bias, and inequality. Here are some tips that will help with this difficult topic. https://lnkd.in/d8NX776 #racism #inequality #prejudice #protests #childrenandracism #difficultconversations

With several campaigns, the month of September brings topics such as the fight against suicide, accessibility for people with disabilities, awareness of cardiovascular diseases, the importance of organ donation and the prevention of bowel cancer, as well as awareness of people with Alzheimer's 🗓 Considered as a public health problem, suicide is still one of the major causes of death and is even more recurrent among young people aged 15 to 29 years; currently the country with the highest suicide rates is Denmark with an average of 90 points. In Brazil, one of the major causes of death is cardiovascular disease, some of which are still being diagnosed in the early stages, and others being developed throughout life. These diseases have symptoms such as feelings of nausea, dizziness, shortness of breath, chest pain, etc. Another campaign addressed in September is the neurodegenerative diseases that mainly affect the elderly people, specially Alzheimer's disease . A disease caused due to an error during the processing of certain proteins in our central nervous system, becoming toxins in our body. Currently we also know the importance of organ donations campaigns that saves thousands of lives around the world, and can help people with the most varied diseases to stabilize or even cure their problems. Finally, September highlights the existence of the most diverse accessibility laws for people with disabilities in Brazil, with the objective of inclusion and quality of life in the most diverse environments, both for corporate business and industrial jobs, as for moments of leisure and entertainment as well.