Brian Jude Loiacono’s Post

Despite being one of the most common forms of Muscular Dystrophy in adults and children, and causing whole of body, life long disability in thousands of Australians, Facioscapulohumeral Dystrophy is not well known and many within our patient community find it difficult to access a diagnosis, care and support. FSHD Global Research Foundation is advocating for our patient community, driving systemic improvement around diagnostics, clincial trial readiness and clinical care as Australia's peak body for FSHD. We target improved quality of life for people living with FSHD and work to fast-track therapies through our funded research, advocacy programs, industry partnerships and patient engagement services. Help us raise awareness for this cruel and relentless disease, and support our advocacy program by donating through your hands, heart, or wallet. #FSHD #clinicaltrialreadiness #advocacy

**Let's turn the world purple for Epilepsy Awareness Day! ** Epilepsy is a common neurological condition that causes seizures. By raising awareness, we can help break down stigma and ensure everyone with epilepsy feels supported. How can you help? Wear purple today! Share this post to spread awareness. Donate to organizations supporting epilepsy research and advocacy. Learn more about epilepsy: Epilepsy Foundation: epilepsy.com Together, we can create a world where everyone with epilepsy feels understood and empowered. #NationalEpilepsyAwarenessDay #PurpleDay #Epilepsy #EndEpilepsyStigma

“Living with pain is not a choice, but how we support those in pain is.” Julia Johnston For this #TestimonialTuesday during #SeptemberPainAwarenessMonth, we are inspired by the stories of those championing better pain management for children everywhere. At ChildKind, we believe in the Five Principles of pediatric pain care: Assessment, Prevention, Advocacy, Partnership, and Education. These pillars guide our mission to improve the quality of life for children worldwide. Do you integrate the 5 Principles of ChildKind in your practice? Comment below to share how you are making a difference! Help us expand our reach and impact—donate today at https://lnkd.in/gbbve2Fg to bring comfort and care to children in need. #ChildKind #DonateNow #PediatricPain #GlobalHealth #CompassionateCare #PainAwareness

For some children, neurofibromatosis (NF) can impact so many moments of their lives. From the presence of tumours and chronic nerve pain to a never-ending cycle of monitoring, surgeries and specialist appointments, it takes it's toll.   But, it is not just the patient who is affected, parents and siblings are also significantly impacted. Recent research has suggested more than half of caregivers said that the NF diagnosis of one child made it challenging to provide the same level of care to their other children. Additionally, nearly 4 out of 5 caregivers experienced a significant or moderate impact on their mental health.   Everyone facing a complex and uncertain future needs someone to turn to, and our donors make sure this is possible. The Children's Tumour Foundation is the only patient advocacy and support service for children, adults and families impacted by NF in Australia.   Your gift today will make a huge difference to so many families tomorrow. Please donate to https://lnkd.in/eeMfcypn today. #conquernf #taxappeal #neurofibromatosis #nfsupport #ctfaustralia #betterfuture #children #advocacy #research

March is Trisomy Awareness Month Children with a Trisomy 13 or Trisomy 18 diagnosis are often viewed by the medical field as "incompatible with life" and not worth fighting for. Many medical facilities will not provide any form of intervention for these children. And will not refer families to doctors that may have more expertise on the diagnosis and life saving measures. At On Angels' Wings, we believe in giving families all of the information about all of the options for their child. Whatever decision fully informed parents make, we will respect and support them through it. But all too often we've seen families be told there are no options, only to find out after they've lost the child they would fight for that intervention could have happened. Giving families no choice due to lack of information is not acceptable. Children with Trisomy 13 and Trisomy 18 ARE compatible with life, and they deserve a chance if it is medically possible and what the family wants to do. OAW will continue to advocate for these children that we believe are worth celebrating, and worth fighting for! You can find Ashlyn's and Eden's full stories on our blog by searching their names: oawphoto.org For more information on Trisomy 13 and Trisomy 18, follow SOFT and Simon's Law. ... #trisomyawarenessmonth2024 #trisomy13 #trisomy18 #trisomyawareness #trisomywarrior #trisomystrong #advocacy #nonprofit #philanthropy #oawphoto #onangelswings #supportservices #griefsupport #grief #griefjourney #griefrecovery #medicallycomplex #medicallyfragile

On this day in 1997, my younger brother Stephen passed away at the age of 13 from a condition called Long QT Syndrome, which is a form of SADS – Sudden Arrhythmic Death Syndromes. SADS are a collection of especially scary conditions because the warning signs are so mild and easy to ignore, if they show up at all. Oftentimes, those with SADS will either faint, or pass away suddenly. My brother was a healthy young kid and a soccer player – and he passed away unexpectedly. The Long QT went undetected his whole life because he was never tested with an ECG, which is why I believe it's so important for people to be aware of this stealthy condition. The good news is that many SADS conditions are highly treatable... IF they’re detected. That’s why I want to encourage everyone who sees this to check out the warning signs of SADS and consider getting yourself and your loved ones screened with an ECG or genetic testing, which – according to the SADS Foundation https://lnkd.in/gswUhc_3 are some of the best ways to detect SADS in people who show symptoms. And if you feel inspired to, please donate to the SADS Foundation. They’re an incredible organization working to help those who have lost a loved one to SADS and to prevent unnecessary deaths by increasing awareness and conducting research on this silent and deadly condition. #inlovingmemory #sadsfoundation #SuddenCardiacArrest #HeartFailure

International Fetal Alcohol Spectrum Disorder (FASD) Awareness Day is observed on September 9th every year. This day aims to raise awareness about the risks of prenatal alcohol exposure and the impact of FASD on individuals, families, and communities. Here are some ways to commemorate this day: 1. Wear red shoes or clothing to symbolize the physical and emotional struggles faced by individuals with FASD. 2. Organize or participate in awareness events, such as walks, runs, or fundraisers. 3. Share information and resources on social media using hashtags like #FASDAwarenessDay or #PreventionMatters. 4. Educate yourself and others about FASD, its effects, and prevention strategies. 5. Support individuals and families affected by FASD through advocacy, volunteering, or donations. 6. Encourage pregnant women or those planning to become pregnant to abstain from alcohol. 7. Collaborate with healthcare providers, educators, and community leaders to promote FASD awareness and prevention. Remember, every effort counts in raising awareness and supporting those affected by FASD!

Encouraging advocacy efforts and initiatives that support heart health is important to me. In particular, I strongly believe in promoting equitable access to healthcare services and resources, regardless of socio-economic status or background. For example, as a board the entire Erins Angels team believes that the health of a stranger is just as important as that of our own loved ones. This belief transfers to this campaign as well. Cardiovascular disease is the number 1 killer of women, and when I found out that only 39% of women received CPR from bystanders compared to 45% of men it shows the bias in the recognition of symptoms and the urgency of response simply based on gender. Stereotypes about women's perceived "frailty" or the misconception that heart attacks predominantly affect men can contribute to a delayed response, and I want to highlight the urgent need for equity focused interventions. By improving access to education and resources we can work towards a more equitable system where all individuals receive timely and appropriate care during medical emergencies. Please help me with this important initiative by donating now: https://lnkd.in/eASySdcW

NASHIA is thrilled to announce that registration is now OPEN for our upcoming two-part webinar series, "Facilitating Effective Communication and Support Between Brain Injury Advisory Councils and State Brain Injury Programs and Other State Agencies." The goal of these trainings is to cultivate interactions between people with lived experience and state agencies where everyone feels heard, validated, and accommodated. Participants will walk away with several strategies that can lead to successful communication between these parties with a focus on better supporting the needs of people with brain injury in advocacy. We encourage participants to join both webinars to hear the perspectives of both parties. Led by experts in the field, this training will provide you with practical tools and strategies to foster more effective interactions. Register for Session One: https://lnkd.in/e4EXVj5k Register for Session Two: https://lnkd.in/e-6Q5Y77 #BrainInjuryAwareness #EffectiveCommunication #Training #NonprofitEvent #SupportAndEmpower #RegisterToday

SUDEP Action Day - October 18, 2024 🧡 Today holds a deeply personal meaning for me. Six years ago, I lost my sister to SUDEP (Sudden Unexpected Death in Epilepsy) at the age of 33. It was a devastating and unexpected tragedy that changed our lives forever. SUDEP Action Day is about raising awareness so that others don’t have to experience the same loss. SUDEP is still not widely understood, but it affects too many families. People with epilepsy, especially those with uncontrolled seizures, are at risk. By spreading awareness and knowledge, we can help prevent these heartbreaking deaths. In honor of my sister and all those we’ve lost, I want to encourage everyone to take action: ✨ How You Can Help: Educate Yourself: Learn more about SUDEP and how it affects people with epilepsy. Talk About It: Start conversations with friends, family, and healthcare professionals about SUDEP and epilepsy risks. Support Research & Advocacy: Donate to organizations working to prevent SUDEP and improve epilepsy care. 🧡 Together, we can make a difference and save lives. Let’s spread the word, share stories, and push for more awareness, support, and change. In loving memory of my sister and all those gone too soon 💜 #SUDEPActionDay #RememberingMySister #EpilepsyAwareness #StopSUDEP #TakeAction