trundl’s Post

All disability parents are superhuman! At a virtual #giveback webinar today, I've learned so much about the PWS syndromes (hyperphagia, decreased pain sensitivity etc), daily challenges and the reminders below: "Telling the parent of a medically fragile child to 'just practice self-care" is like telling someone in a hurricane to open their umbrella." "Avoid using cliches (e.g. it happens for a reason, look at the bright side)." "Listen without offering advice." "Get to know their child." "Invite and include them." Besides donating, let's also become an ALLY to disability caretakers and help raise more awareness. Also, want to share Bron's IG: https://lnkd.in/gKJGRji3 with everyone as his SMILES are contagious! 😍 #WeAreCisco

What a fantastic smile on your face Georgina! We love seeing photos of children receiving their Little Box of Hope support packs from Juvenile Arthritis Research like this fabulous photo of Georgina. These boxes are put together by our volunteers and are packed with lots of helpful information and resources for children and families affected by Juvenile Idiopathic Arthritis (JIA) in the UK. We also have a plethora of resources available on our website too, but we know that families find that receiving a physical pack of information is particularly helpful to them and their child. Many thanks for sharing this photo with us. Find out more about the family support we provide at www.jarproject.org/hope In addition to the information available on our website, our volunteers can also provide 1:1 support where needed for families and schools, in addition to our regular Parent Zoom sessions. Keep an eye on your emails and in our peer-to-peer Facebook group to hear details of when each Parent Zoom session will be. #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #JuvenileArthritisResearch #Kipo #Arthritis #ChildhoodArthritis #ChronicIllness #AutoimmuneDisease #JARProject #JIAWarrior #ArthritisAwareness #charity #CharitableCause #NonProfit #Donate #Support #causes #fundraising #philanthropy #KidsWithArthritis #KidsGetArthritisToo #DontBeAloneWithJIA #InstaCharity #RaiseAwareness #ThinkJIA #AwarenessIsEverything #PaediatricRheumatology #ALBOH #ALittleBoxOfHope

Our 'I have JIA' cards are the perfect back-to-school companion. Designed by young people with Juvenile Idiopathic Arthritis (JIA) they share the key messages that young people wanted their teachers and peers to know. Business-card sized, they can be discreetly shown to teachers to avoid the lengthy and 'embarrassing'* discussions that young people find themselves having to have to explain about their JIA at school. We include these cards in our Little Box of Hope packs but if you've lost yours or already passed them to a teacher, you can print your own extra copies at www.jarproject.org/hope and click on the "I have JIA" cards Print at Home button. *There should be no embarrassment or stigma about having JIA but this is how young people have described feeling when they feel they have to share about their JIA in a school setting with a member of staff or in front of peers. These cards were created as a tool to make it easier for them. #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #JuvenileArthritisResearch #Arthritis #ChildhoodArthritis #ChronicIllness #AutoimmuneDisease #JARProject #JIAWarrior #ArthritisAwareness #charity #CharitableCause #Donate #Support #causes #fundraising #philanthropy #KidsWithArthritis #KidsGetArthritisToo #DontBeAloneWithJIA #InstaCharity #RaiseAwareness #ThinkJIA #AwarenessIsEverything #PaediatricRheumatology #School #JIAinSchool

"Thank you so much for the Little Box of Hope, Lyla was so chuffed to receive it this morning and loves the goodies inside." When a child is diagnosed with Juvenile Idiopathic Arthritis (JIA), it can be a very worrying and overwhelming time for a family. There is a lot to come to terms with and understand about a condition that you may not have even heard of before. You may have questions about what the future holds for your child and you may not know anyone else going through what you are going through. That's why our Little Box of Hope support packs are a lifeline for families. Packed with useful information and resources for a child with JIA and their family, the boxes have been developed by those with JIA and their families along with medical professionals to provide the information you need when your child is first diagnosed. The Little Box of Hope packs are just the beginning as you will then also have access to our parent/carer online group, attend our ParentZoom sessions and receive 1:1 support from our volunteers. You'll also receive information about our school resources to pass to your school too. These are available free of charge to families in the UK and are made possible by the kind and generous donations from those supporting our charity and the amazing people who fundraise for us. Thank you for enabling us to be there for children, young people and families affected by JIA. A big thank you to Lyla and her family for sending us this fabulous photo of Lyla receiving her Little Box of Hope. We love seeing your photos so please do keep sending them in. If you've already sent us a photo of your child receiving their Little Box of Hope pack, keep an eye on our social channels as we'll be continuing to share these photos over the coming weeks and months. To find out more about a Little Box of Hope, please see www.jarproject.org/hope #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #JuvenileArthritisResearch #Arthritis #ChildhoodArthritis #ChronicIllness #AutoimmuneDisease #JARProject #JIAWarrior #ArthritisAwareness #charity #Support #causes #fundraising #KidsWithArthritis #KidsGetArthritisToo #ThinkJIA #AwarenessIsEverything 

Did you know that since its inception, Movember has funded over 1,250 projects aimed at tackling mental health issues, suicide prevention, and improving outcomes for prostate and testicular cancer? It’s an incredible legacy, and I’m proud to contribute. This year, I’ve upped the challenge - committing to running 150km throughout the month and growing a mo to raise awareness and funds for these crucial causes. With 82km down, and less than two weeks to go, I am on the home stretch. Movember isn’t just about fundraising—it’s about starting conversations, breaking stigmas, and encouraging men to prioritize their health. If you’d like to support, you can donate here: https://lnkd.in/gfCK8Wjg. Even if donating isn’t possible, you can still make a big impact. Share this post, talk to a mate about mental health, or simply grow a mo and join the movement. Together, we can stop men from dying too young. 💙 #Movember #MensHealth #RunForAMo #MoGoals #MentalHealthAwareness

Join Me in Movember: Let's Break the Stigma Around Men's Health It's Movember! I'm shaving my beard and growing a mustache to raise awareness for crucial men's health issues: - Men's mental health - Suicide prevention - Prostate cancer - Testicular cancer Let's break the stigma surrounding these topics. Every conversation, every donation, and every mustache counts! Support the cause by donating via link below. Your contribution will fund research, education, and support programs. Let's make a difference together! #Movember #MensHealth #MentalHealthMatters #SuicidePrevention #ProstateCancer #TesticularCancer #BreakTheStigma #DonateNow

Did you know for less than 63 cents PER DAY you can help save the life of someone with a urea cycle disorder, and help those currently living with urea cycle disorders? The best part? Once you set up your recurring donation one time, it continues until you cancel it. That means it's one less thing to think about each month on your ever-growing to-do list, yet you can still impact so many individuals' lives. Get more details here: https://lnkd.in/efnCjBgD #nationalureacycledisorderfoundation #nucdf #ureacycle #ureacycledisorders #otcdeficiency #metabolicdisorder #geneticdisorder #nucdfwarrior

#Movember So this is the last week of my Movember campaign to raise funds and awareness for Men's mental health and overall well-being. You can’t fix someone else’s problems, but you can be there for them. Sometimes #listening is the #mosthelpful thing you can do. You won’t make things worse by asking someone how they’re doing. #Goodconversations can happen anywhere. Sometimes it’s easier to start a conversation via text or chat, and that’s fine too. #Movember donations could help a man diagnosed with prostate cancer live longer, help for robust research and resources that guide another man through testicular cancer recovery and can also fund vital mental health and suicide prevention projects. Help me change more lives by donating now. Here is my MoSpace for 2024: https://lnkd.in/g_YBt_4c #ThankYou #Gratitude #FundRaiser #Movember #MentalHealth

The photos we share don't show truly what a day in the life of a child is like. It's a snapshot. And it's usually of a super sweet adorable human. <3 But this is the reality for Zhanarah. So, Picture it. (in the voice of Sophia Petrillo from the Golden Girls) No real ceiling, just a makeshift roof held up by a branch. When it rains, they're using that branch as a clothesline to keep the place from turning into a swimming pool. All while the family is surviving on less than $90 a month. This is the reality of Zhanarah's family. Zhanarah is a 2-year-old girl in the Philippines. She has been diagnosed with Epilepsy, Global Development Delay, Hydrocephalus, and Lissencephaly Pachygyria. (see definition below) Her parents are doing their best to provide for their baby girl, but they can barely make enough to survive. Let me know if you want to help Zhanarah. <3 - Lissencephaly (agyria or smooth brain) is a rare congenital anomaly representing an arrest of brain development before the third or fourth month of gestational age. It may occur alone or in association with many other syndromes. #MayasHope #help #donation #donating #childinneed #saveachild #donateforchildren #NYCnonprofit #USAcharity #USAnonprofit #NYCcharity #NYC #USA #everychildhasvalue

Have you been curious about becoming an egg donor? It's a deeply rewarding process, but important physical and emotional requirements must be considered. We look for donors who are healthy, emotionally mature, and ready for the commitment. To ensure a smooth donation process, egg donors must be between 21 and 29 years old, in good health, and have a BMI below 28. Equally important is emotional preparedness—donation is a big commitment, and we want to ensure you're ready for the journey. Are you ready to help others start their families? Learn more and let our team at Family Inceptions support your journey! https://hubs.ly/Q02S2jN00 #familyinceptions #fertilitycafe #fertility360 #eggdonor #fertilitysupport #eggdonationjourney #family #familybuilding #blog #bloglife #bloggers #love #loveislove