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#rohhadawareness

Posts tagged as #rohhadawareness on Instagram

276 Posts

This is Sham. A 20 year old handsome boy who’s battling ROHHAD Syndrome, a disease that affects only 100 people worldwide. Having spent almost his entire life relying on hospitals, medicines, and machines for life support, Sham takes up the initiative of learning on his own. He couldn’t go to school, although his family did try sending him when he was 7. Things didn’t work out. He spent 10 years LIVING in the hospital, spending all his birthdays & Raya on the hospital bed. But he’s made it through this far. & behind this strong-willed, cheerful & intelligent boy, there are 5 machines attached to him just to keep him alive. He struggles with his speech, and his main source of energy is from his milk, fed to him through a tube attached to his stomach. Sham consumes one tin of milk (RM80) per day. Per month, his milk consumption costs up to RM3k. And that’s just his milk. •  If you are keen on helping Sham & his family financially, feel free to approach us for further details. Until then, we would like to remind everyone to not be insensitive & rude if you ever see him outside. He’s fighting a battle that many have lost, and he’s been fighting hard for 20 years. What have you been fighting for? •  #rohhad #rohhadawareness
🌻 Kami dalam proses merancang acara Charity Run, #runforrohhad , untuk mengutip dana bagi membantu adik Ahmad Shamsuri bin Ahmad Salihim (20 thn) yang merupakan penghidap ROHHAD di Malaysia. Kami memerlukan sukarelawan untuk membantu kami dalam menganjurkan acara ini. Sila komen atau mesej kami untuk mendaftarkan diri anda! • 🌻 We are in the process of planning a Charity Run event, #runforrohhad , to collect donations for Ahmad Shamsuri bin Ahmad Salihim, a 20 year-old Malaysian who has been battling ROHHAD his entire life. We are looking for volunteers to help us in the planning & execution of this event. Kindly comment or drop us a message to volunteer!  #rohhad #rohhadawareness #runforrohhad
🌻 ROHHAD Syndrome merupakan satu penyakit yang amat jarang berlaku dan ketika ini hanya dihidapi oleh 100 orang di seluruh dunia. Di Malaysia, hanya 2 orang yang menghidap ROHHAD. ROHHAD merupakan singkatan atau akronim kepada: rapid-onset obesity (RO) with hypothalamic dysregulation (H), hypoventilation (H), and autonomic dysregulation (AD). Penghidap penyakit ROHHAD memerlukan bantuan mesin-mesin pernafasan dan pemakanan untuk meneruskan kehidupan mereka. Penyakit ini TIDAK BERJANGKIT, jadi jika anda berjumpa dengan pesakit-pesakit ROHHAD ini, tidak perlu rasa takut atau was-was untuk dekatkan diri anda bersama mereka 😊 • • • • • •🌻 ROHHAD Syndrome is a very rare disease affecting only 100 people globally, and only 2 Malaysians to-date. ROHHAD is an acronym for rapid-onset obesity (RO) with hypothalamic dysregulation (H), hypoventilation (H), and autonomic dysregulation (AD). Patients with ROHHAD rely heavily on machines to survive. This disease is NOT INFECTIOUS, so if you ever come across a ROHHAD patient, do not hesitate to approach & say hi! 😊 •  #rohhad #rohhadawareness
The 2019 Pow Wow Parade is in the books and what an amazing time it was!! Thank you to everyone that came out and walked with us, we couldn’t do this without you all. 💜💜 #kimmysfight #kimmysrohhadfight #rohhad #rohhadfight #kimmysfightagainstrohhad #rohhadawareness
"In hospital for 92 days so far but I can still show you my sweetest smile. Its melts mamas heart! I'm am her hero!" #bannerbrave #hulksmashrohhad #rohhadawareness #bannermazza
Watching fishes in 3d! Thanks Auntie @lolarocknrolla #bannerbrave #hulksmashrohhad #rohhadawareness #bannermazza
Sweet lil Banner! He was so little!!! #bannerbrave #hulksmashrohhad #rohhadawareness
This Kid.. #rohhad #rohhadawareness #rohhadsucks
💛💙💜💚❤ #repost @robertdowneyjr • • • • • • Today is Rare Disease Day 2019 - Please meet some of the inspiring children and families battling the life threatening and life limiting, rare disease ROHHAD. Please watch the video... Link in my bio ⬆️... The Awareness video was made with the help of  @mo_freek and @jimmy_rich from #teamdowney ... It has been created to help raise awareness so please share this today for the children as this is their #rarereality ... Please #shareyourrare and #showyoucare  #rarediseaseday #2019 #gomadforrohhad #missionfindacure #rohhadawareness -------------------------------
#repost @robertdowneyjr  A real superhero stands up for those who are vulnerable and suffering. Well-known celebrity and Iron Man @robertdowneyjr teamed up with Aaron Hunter to help raise awareness for the children who suffer from the extremely rare, life threatening and life limiting disease ROHHAD.  Together they hope to raise funds to help researchers in America, Canada, Italy and the UK , understand the disease, improve treatments and hopefully one day find a cure.  Watch the video - shared on our Facebook page.  Thank you #teamdowney for #showingyourrare 💙  Credits: @mo_freek and @jimmy_rich from #teamdowney
Today is Rare Disease Day 2019 - Please meet some of the inspiring children and families battling the life threatening and life limiting, rare disease ROHHAD. Please watch the video... Link in my bio ⬆️... The Awareness video was made with the help of @mo_freek and @jimmy_rich from #teamdowney ... It has been created to help raise awareness so please share this today for the children as this is their #rarereality ... Please #shareyourrare and #showyoucare  #rarediseaseday #2019 #gomadforrohhad #missionfindacure #rohhadawareness @robertdowneyjr @doubleuayne  #🃏comicsweaties©📙
Jonathan is one of about 100 children worldwide..living with this horrible illness. #rohhadassociation #rohhad #rohhadawareness #rohhadsucks
My sweet boy playing, entertaining the ladies. Melting hearts per usual 😍😍😍 #bostonchildrenshospital #bannerbrave #hulksmashrohhad #rohhadawareness
Banner and Weston. Best friends since the belly. #westonwilliamaldo #bannerbrave #hulksmashrohhad #rohhadawareness
Today is Rare Disease Day 2019 - Please meet some of the inspiring children and families battling the life threatening and life limiting, rare disease ROHHAD. Please watch the video... Link in my bio ⬆️... The Awareness video was made with the help of  @mo_freek and @jimmy_rich from #teamdowney ... It has been created to help raise awareness so please share this today for the children as this is their #rarereality ... Please #shareyourrare and #showyoucare  #rarediseaseday #2019 #gomadforrohhad #missionfindacure #rohhadawareness
He always liked to be naked and he still does! Naked at the zoo. That's the life. #bannerbrave #hulksmashrohhad #rohhadawareness
Reposted from @teamdowney1965 -  Today is Rare Disease Day 2019 - Real hero right there. Everyone deserves hope.. Aaron, You are not alone. - I asked everyone please pray for this child please pray for all the children ! -  #rarediseaseday #2019 #gomadforrohhad #missionfindacure #rohhadawareness @rohhad_association_charity #thankyou #teamdowney #family  #susandowney @robertdowneyjr @jimmy_rich 📹 - #regrann
Rapid-onset fedme med hypotalamisk dysfunktion, hypoventilation og autonom dysregulering (ROHHAD) er en sjælden lidelse med abnormiteter i vejrtrækning (hypoventilation), det endokrine system og det autonome nervesystem (ANS). ANS er en del af nervesystemet, der styrer de ufrivillige kroppsfunktioner. Derfor virker det 'automatisk' for at kontrollere vejrtrækning, hjerteslag, fordøjelse, blandt mange andre ting. ROHHAD blev først beskrevet i 1965, og siden da er kun 75 børn blevet rapporteret i litteraturen med denne lidelse. På grund af den høje forekomst af kardiorespiratorisk arrestering er tidlig anerkendelse og behandling af symptomer forbundet med ROHHAD afgørende. #rohhad #rarediseaseday #sjældnedag #rohhadassociation #danmark #syg #kronisksyg #cronicdiseases #gomadforrohhad #findacure #rohhadawareness #rohhadsyndrome #rohhadsucks #syndrome #fact #chances #diagnosed #1in73milluon
Rapid-onset fedme med hypotalamisk dysfunktion, hypoventilation og autonom dysregulering (ROHHAD) er en sjælden lidelse med abnormiteter i vejrtrækning (hypoventilation), det endokrine system og det autonome nervesystem (ANS). ANS er en del af nervesystemet, der styrer de ufrivillige kroppsfunktioner. Derfor virker det 'automatisk' for at kontrollere vejrtrækning, hjerteslag, fordøjelse, blandt mange andre ting. ROHHAD blev først beskrevet i 1965, og siden da er kun 75 børn blevet rapporteret i litteraturen med denne lidelse. På grund af den høje forekomst af kardiorespiratorisk arrestering er tidlig anerkendelse og behandling af symptomer forbundet med ROHHAD afgørende. #rohhad #rarediseaseday #sjældnedag #rohhadassociation #danmark #syg #kronisksyg #cronicdiseases #gomadforrohhad #findacure #rohhadawareness #rohhadsyndrome #rohhadsucks #syndrome #fact #chances #diagnosed #1in73million
Today is Rare Disease Day 2019 - Please meet some of the inspiring children and families battling the life threatening and life limiting, rare disease ROHHAD. Please watch the video... Link in my bio ⬆️... The Awareness video was made with the help of @mo_freek and @jimmy_rich from #TeamDowney ... It has been created to help raise awareness so please share this today for the children as this is their #RareReality ... Please #ShareYourRare and #ShowYouCare  #rarediseaseday #2019 #gomadforrohhad #missionfindacure #rohhadawareness
#repost credit to @robertdowneyjr Today is Rare Disease Day 2019 - Please meet some of the inspiring children and families battling the life threatening and life limiting, rare disease ROHHAD. Please watch the video... Link in my bio ⬆️... The Awareness video was made with the help of  @mo_freek and @jimmy_rich from #teamdowney ... It has been created to help raise awareness so please share this today for the children as this is their #rarereality ... Please #shareyourrare and #showyoucare  #rarediseaseday #2019 #gomadforrohhad #missionfindacure #rohhadawareness #thor #loki #wintersoldier #buckybarnes #tomhiddleston #markruffalo  #captainamerica #mcu #marvel  #steverogers #chrisevans #valkyrie #infinitywar #teamcap #thorragnarok #captainamericacivilwar  #ironman #blackpanther #blackwidow
«Железный человек» с золотым сердцем. Сегодня Всемирный день редких заболеваний и Роберт Дауни Младший рассказал об одном из таких: синдром Роххад. На снимке маленький поклонник и друг Роберта - девятилетний Аарон Хантер, страдающий от этого непростого заболевания, которое поражает именно детей. Примерно до трёх лет синдром никак не проявляет себя и ребёнок нормально растёт и развивается, а затем молниеносно малыш сталкивается с внезапным ожирением, проблемами с дыханием, гормональной дисфункцией и риском отказа внутренних органов в любой момент. Диагностирование заболевания сейчас находится в плачевном состоянии: проходят годы прежде чем врачи могут поставить правильный диагноз и назначить терапию несчастным детям. Уже известны случаи летальных исходов. Болезнь эта совсем не изучена: не проводится масштабных исследований, не производится эффективных лекарств: попросту нет финансирования. Именно поэтому Роберт помогает фонду «Ассоциация Роххад» донести проблему до широкой общественности. Актёр снялся в фильме, рассказывающем о том, с чем приходится жить семьям этих
#repost @imironstark • • • • • Today is Rare Dissease Day 2019. Please watch the video. https://youtu.be/a-jXa5yzRNc  #rarereality #shareyourrare #showyoucare #raredisseaday #gomadforrohhad #missionfindacure #rohhadawareness #robertdowneyjr #rdj #teamdowney #teamstark #avengersendgame #endgame @robertdowneyjr @rohhad_association_charity @jimmy_rich @mo_freek
#repost of @robertdowneyjr ----- Today is Rare Disease Day 2019 - Please meet some of the inspiring children and families battling the life threatening and life limiting, rare disease ROHHAD. Please watch the video... Link in my bio ⬆️... The Awareness video was made with the help of @mo_freek and @jimmy_rich from #TeamDowney ... It has been created to help raise awareness so please share this today for the children as this is their #RareReality ... Please #ShareYourRare and #ShowYouCare  #rarediseaseday #2019 #gomadforrohhad #missionfindacure #rohhadawareness
I had to repost @robertdowneyjr PLEASE go to his bio and watch the video. Help spread the awareness #godbless #prayingforacure #spreadawareness #shareyourrare #showyoucare #icare #rarediseaseday #2019 #gomadforrohhad  #gomadjumpforrohhad #jumpinamudpuddle #mudpuddles #mudpuddle #jump #missionfindacure #rohhadawareness #ironman #thankyou #robetdowneyjr for raising this awareness! 😘 I can’t believe how low some of these hashtags are for this 💔 let’s #spreadtheword #childernoftheworld
@robertdowneyjr is such an amazing person. This is awesome 👏  #rohhadawareness #rarediseaseday2019 #ironman #avengers #robertdowneyjr
Sjældne dag.  Jeg har en mega sjælden sygdom Rohhad, som under 100 i verden har. Jeg er den ældste nulevende med sygdommen. Man død ofte først i 20’erne, og jeg er nu 28 år. Jeg føler mig meget heldig  Rapid-onset fedme med hypotalamisk dysfunktion, hypoventilation og autonom dysregulering (ROHHAD) er en sjælden lidelse med abnormiteter i vejrtrækning (hypoventilation), det endokrine system og det autonome nervesystem (ANS). ANS er en del af nervesystemet, der styrer de ufrivillige kroppsfunktioner. Derfor virker det 'automatisk' for at kontrollere vejrtrækning, hjerteslag, fordøjelse, blandt mange andre ting. ROHHAD blev først beskrevet i 1965, og siden da er kun 75 børn blevet rapporteret i litteraturen med denne lidelse. På grund af den høje forekomst af kardiorespiratorisk arrestering er tidlig anerkendelse og behandling af symptomer forbundet med ROHHAD afgørende. #rohhad #rarediseaseday #sjældnedag #rohhadassociation #danmark #syg #kronisksyg #cronicdiseases #gomadforrohhad #findacure #rohhadawareness #rohhadsyndrome #rohhadsucks #syndrome
Today is Rare Dissease Day 2019. Please watch the video. https://youtu.be/a-jXa5yzRNc ••• #rarereality #shareyourrare #showyoucare #raredisseaday #gomadforrohhad #missionfindacure #rohhadawareness #robertdowneyjr #rdj #teamdowney #teamstark #avengersendgame #endgame @robertdowneyjr @rohhad_association_charity @jimmy_rich @mo_freek
@robertdowneyjr post/📸 ➡️ Today is Rare Disease Day 2019 - Please meet some of the inspiring children and families battling the life threatening and life limiting, rare disease ROHHAD. Please watch the video... Link in my bio ⬆️... The Awareness video was made with the help of  @mo_freek and @jimmy_rich from #teamdowney ... It has been created to help raise awareness so please share this today for the children as this is their #rarereality ... Please #shareyourrare and #showyoucare  #rarediseaseday #2019 #gomadforrohhad #missionfindacure #rohhadawareness
#new post of #robertdowneyjr in his ig, Good Morning y'all.. Have a fun day 😋♥️---Today is Rare Disease Day 2019 - Please meet some of the inspiring children and families battling the life threatening and life limiting, rare disease ROHHAD. Please watch the video... Link in my bio ⬆️... The Awareness video was made with the help of  @mo_freek and @jimmy_rich from #teamdowney ... It has been created to help raise awareness so please share this today for the children as this is their #rarereality ... Please #shareyourrare and #showyoucare  #rarediseaseday #2019 #gomadforrohhad #missionfindacure #rohhadawareness
Reposted from @robertdowneyjr -  Today is Rare Disease Day 2019 - Please meet some of the inspiring children and families battling the life threatening and life limiting, rare disease ROHHAD. Please watch the video... Link in my bio ⬆️... The Awareness video was made with the help of  @mo_freek and @jimmy_rich from #teamdowney ... It has been created to help raise awareness so please share this today for the children as this is their #rarereality ... Please #shareyourrare and #showyoucare  #rarediseaseday #2019 #gomadforrohhad #missionfindacure #rohhadawareness - #regrann
Robert Downey jr. With a wonderful child facing very rare challenges.❤ Today is #rarediseaseday2019 #rarediseaseday #robertdowneyjr #repost  #rohhad #rohhadawareness #rohhad #teamdowney #gomadforrohhad #showyoucare
#repost @robertdowneyjr with @get_repost ・・・ Today is Rare Disease Day 2019 - Please meet some of the inspiring children and families battling the life threatening and life limiting, rare disease ROHHAD. Please watch the video... Link in my bio ⬆️... The Awareness video was made with the help of  @mo_freek and @jimmy_rich from #teamdowney ... It has been created to help raise awareness so please share this today for the children as this is their #rarereality ... Please #shareyourrare and #showyoucare  #rarediseaseday #2019 #gomadforrohhad #missionfindacure #rohhadawareness
Today is Rare Disease Day 2019 - Real hero right there. Everyone deserves hope.. Aaron, You are not alone. - I asked everyone please pray for this child please pray for all the children ! -  #rarediseaseday #2019 #gomadforrohhad #missionfindacure #rohhadawareness @rohhad_association_charity #thankyou #teamdowney #family  #susandowney @robertdowneyjr @jimmy_rich 📹
#repost @robertdowneyjr ・・・ Today is Rare Disease Day 2019 - Please meet some of the inspiring children and families battling the life threatening and life limiting, rare disease ROHHAD. Please watch the video... Link in my bio ⬆️... The Awareness video was made with the help of  @mo_freek and @jimmy_rich from #teamdowney ... It has been created to help raise awareness so please share this today for the children as this is their #rarereality ... Please #shareyourrare and #showyoucare  #rarediseaseday #2019 #gomadforrohhad #missionfindacure #rohhadawareness
Good Morning. Z😙😙😙 From @robertdowneyjr -  Today is Rare Disease Day 2019 - Please meet some of the inspiring children and families battling the life threatening and life limiting, rare disease ROHHAD. Please watch the video... Link in my bio ⬆️... The Awareness video was made with the help of  @mo_freek and @jimmy_rich from #teamdowney ... It has been created to help raise awareness so please share this today for the children as this is their #rarereality ... Please #shareyourrare and #showyoucare  #rarediseaseday #2019 #gomadforrohhad #missionfindacure #rohhadawareness - #regrann
#repost @robertdowneyjr with @repostsaveapp + ・・・ Today is Rare Disease Day 2019 - Please meet some of the inspiring children and families battling the life threatening and life limiting rare disease ROHHAD. Please watch the video... Link in my bio ⬆️... The Awareness video was made with the help of  @mo_freek and @jimmy_rich from #teamdowney ... It has been created to help raise awareness so please share this today for the children as this is their #rarereality ... Please #shareyourrare and #showyoucare  #rarediseaseday #2019 #gomadforrohhad #missionfindacure #rohhadawareness
Today is Rare Disease Day 2019 - Please meet some of the inspiring children and families battling the life threatening and life limiting rare disease ROHHAD. Please watch the video... Link in my bio ⬆️... The Awareness video was made with the help of @mo_freek and @jimmy_rich from #TeamDowney ... It has been created to help raise awareness so please share this today for the children as this is their #RareReality ... Please #ShareYourRare and #ShowYouCare  #rarediseaseday #2019 #gomadforrohhad #missionfindacure #rohhadawareness
#repost @robertdowneyjr • • • • • • Today is Rare Disease Day 2019 - Please meet some of the inspiring children and families battling the life threatening and life limiting rare disease ROHHAD. Please watch the video... Link in my bio ⬆️... The Awareness video was made with the help of  @mo_freek and @jimmy_rich from #teamdowney ... It has been created to help raise awareness so please share this today for the children as this is their #rarereality ... Please #shareyourrare and #showyoucare  #rarediseaseday #2019 #gomadforrohhad #missionfindacure #rohhadawareness * Absolute golden heart 💛💛💛 #robertdowneyjr #rdj #sherlockholmes #ironman #tonystark #thejudge #tropicthunder #chaplin #marvel #avengers #charities #goldenheart #robertdowneytease
#repost @robertdowneyjr ・・・ Today is Rare Disease Day 2019 - Please meet some of the inspiring children and families battling the life threatening and life limiting rare disease ROHHAD. Please watch the video... Link in my bio ⬆️... The Awareness video was made with the help of  @mo_freek and @jimmy_rich from #teamdowney ... It has been created to help raise awareness so please share this today for the children as this is their #rarereality ... Please #shareyourrare and #showyoucare  #rarediseaseday #2019 #gomadforrohhad #missionfindacure #rohhadawareness
Today is Rare Disease Day 2019 - we would like you to meet some of our Inspiring children and families battling the life threatening and life limiting Rare Disease ROHHAD.  Please watch the video link in our bio or the live video in our story.  The Awareness video was made with the help of @robertdowneyjr and @mo_freek,  @jimmy_rich from #teamdowney it has been created to help us raise awareness so please share this today for the children as this is their #rarereality, Please #shareyourrare and #showyoucare  #rarediseaseday 2019 #gomadforrohhad #missionfindacure #rohhadawareness
Engaged couples!!! Stop scrolling and check out this awesome giveaway we are donating to a raffle at a local fundraiser next weekend. If you win this item you will receive $500 off of any of our highlight film packages. It also includes a few "bride and groom" themed travel items! 👰✈️ . . . Here are some details about the event. (Swipe left for event flyer): 📅WHEN: March 3,2019 from 1-6pm 🦀WHERE: George's of Galilee - 250 Sand Hill Cove Road in Narragansett, RI ❤️WHY: Our little friend Banner has been diagnosed with ROHHAD's.  It's a very rare life threatening disease (there are only 100 cases worldwide). He was diagnosed in the summer and has been in the hospital since December. This fundraiser is being held to help his family with the financial struggles they've been facing from going back and forth to Boston every day and not being able to work as much. It's also a way to celebrate how amazing this kid is. We are kind of biased, but he is the sweetest most loveable kid we know. . . . Please join us on March 3rd and buy some raffle tickets for the chance to win our giveaway and many other awesome prizes. ❤️ . . . #hulksmashrohhad #rohhadawareness #rarediseases #rarediseaseday #bannerstrong #bannersmashrohhad #weddingfilms #giveaway #localfundraiser #georgesofgalilee
Harper is a very special person to me. Not only is she my best friends daughter, she is my daughter's friend, my student, my before and after school buddy, she is one if the happiest people I've met on the entire planet. She gives hugs to everyone she sees and she genuinely is happy to see everyone. My class learns from her every day, I learn from her everyday. We learn how to be strong, forgiving, brave, and kind from Harper. Nobody truly understands the struggle she goes through everyday at school because she is so dang positive all the time, but she is tired. Tired from lack of sleep, tired from being tired. And she still tries her best in EVERYTHING she does. She is my hero.  We have an auction coming up in April. We are looking for auction items, large and small. Please contact me if you could donate, any item or amount of money. alyanawatson@hotmail.com Or you can message me on Facebook, or 208-819-2210.  Thank you for all your help and support!  #rohhadsucks #rohhadawareness #hopeforharper
#missingmysoninheaven #fuckyourohhad #rohhadawareness #wouldgivemylifeforonemoredaywithyou
Yep! 🤦‍♀️ But there is no backing out now! I’m over halfway to my fundraiser target, determined to hit that £2k for @rohhad_association_charity and raise awareness for all those beautiful children that are suffering. Must keep pushing on!! 🏃🏼‍♀️💪🏻 #doingitforthem #marathontraining #firstmarathon #marathonmum #mumswhorun #runmummyrun #mamatorunner #godhelpme #inspo #postpartum #letsdoit #rohhad #rohhadawareness #rohhadassociation #zerotohero
So relieved to see AaronMan is recovering well so far. Please continue to keep him in your prayers and thoughts just now. It is still early in his recovery but a great start! Aaron you have got this 👌 #rohhadawareness #gomadforrohhad #aaronmanisbrave 💞
My youngest child has been recently diagnosed with an extremely rare, life-threatening, and life-limiting condition called ROHHAD. When my four and eight year old started asking questions about souls, I knew it was time to start incorporating books on this topic. These two books helped to open up dialogue, ask questions, and have meaningful conversations. I love that children’s books have the ability to help us heal, to induce thinking and questions, and to comfort us. I can’t imagine being on this journey of motherhood without the books and stories. They are such an integral piece of our family. WHERE DO THEY GO by Julia Alvarez and WHEREVER YOU ARE MY LOVE WILL FIND YOU by Nancy Tillman. #bookstagram #book #books #bookobsessed #bookish #booknerd #bookcommunity #booklover #kidlit #childrensliterature #kidlitpicks #writers #childhood #childhoodunplugged #betterwithbooks #souls #soulcontract #motherhood #parenthood #familylife #diagnosis #rohhadawareness #lifewithkids
Happy New Year to all the Inspiring Children battling ROHHAD Syndrome, their families and everyone who has supported our charity in 2018.  Wishing you all a happy healthy 2019 and we hope that you will all continue to support us as we keep working hard on our mission to #findacure.  Reflecting on 2018 it was a wonderful year for our charity, #rohhadawareness increased globally, we had a little help from Aaron and his best friend #ironman, Robert Downey Jr we had #gomadjumpforrohhad and many many fundraisers all around the world! Each and everyone a huge success wether it was £100  or £100k raised every last penny matters when it comes to ROHHAD Research and finding a cure.  We remember always in our hearts the angels who gained their wings because of ROHHAD  not only in 2018 but in years gone by.  We have met many more families this past year and have quite a few new cases diagnosed meaning that ROHHAD likely affects more than 100 children worldwide now but is still extremely rare and technically an orphan disease.  With your continued support we will change this and we are all excited for what 2019 holds for us.  Looking forward our applications for funding this year are already underway and all being well Rohhad research funded by our charity  will be well underway by summer this year.  We have many exciting fundraisers planned and some of those are global and ones that you can join in and show your support. Keep watching our social media and website over the next few weeks for more on how to get involved this year.  For now though it's a big HAPPY NEW YEAR From all at Team ROHHAD Avengers 🎉❤️
Merry Christmas from me & these crazies!! These girls give me so much joy every time I see them especially miss Harper Jay 💜💜 There’s something so special about her and I’m so lucky I get to be her auntie 🎅🏼🎄 #rohhadawareness #stronglittlegirl
My great nephew and his family are having a fundraiser to help with the expenses with Banner’s rare syndrome #family #love #nephew #rare #syndrome #health #rohhad #rohhadawareness #child #children #innocent #sad #fundraiser #bakesale #treatment #hospital #breaksmyheart
I’m doing the marathon in support of the ROHHAD association and this is my magic cape that’s somehow going to help me finish the race lol. A cold morning run today with a quicker pace, just under 4k in 23 mins 😃🏃🏼‍♀️ #rohhadassociation #gettingbetter #runmummyrun #mamatorunner #maternityfitness #matleave #rohhadawareness #zerotohero #runforrohhad
Help out share https://www.gofundme.com/banner039s-world #banman #mom #health #raiseawareness #help @lyndsaymae2002 #rohhadassociation #rohhadawareness
This past Saturday, TYPP hosted their 2nd Annual Charity Softball Tournament & raised over $4K towards #rohhadfight in honor of a little girl named Marisa. Thank you to everyone who participated & helped raise awareness towards this rare disease. . . . . . . . . #psegli #community #communitypartners #givingback #charity #charityevent #charitytournament #tournament #softball #longisland #nassaucounty #suffolkcounty #baldwin #baldwinpark #electric #electriccompany #rohhad #rohhadawareness #rohhadsyndrome
GUYS.  YOU COULD WIN *THIS* GROOT JACKET!  I saw it in person and it is AMAZING!  @vindiesel rocked this when he signed for us.  Check out the link @RobertDowneyJr posted in his bio and bid to help @ROHHAD_GLOBAL! ❤ . . #rohhad #robertdowneyjr #rdj #charity #bid #donate #rohhadawareness #rohhadassociation #infinitywar
Can't believe it's been 2 years since my Ironman run round the vale and Balloch! Once the knees better, will be dusting off the suit for another run 🏃‍♂️ #rohhad #ironman #rohhadawareness
Representing our girl today!!!! #hopeforharper #rohhadawareness #rohhadsucks #rohhadassociation #findacure
Please take just a minute out of your busy day to watch and share ☺️👍 https://twitter.com/loulou180585/status/993924936136843264?s=21 #gomadjumpforrohhad #rohhad #rohhadawareness #share #spreadtheword #shoutout #littleheroes
Our jump was a success! Can't wait to get the video edited and out there for everyone to see. In the meantime here's a group shot from this afternoon. 💜💜 #kimmysfight #kimmysrohhadfight #rohhadfight #rohhadawareness #rohhad #gomadjumpforrohhad
I love him singing.. which song of RDJ is your favourite?  Also don't forget to donate ❤️ #robertdowneyjr #rdj #rohhadawareness #randomactfunding #ironman #avengers #avengersinfinitywar #infinitywar #tonystark
I took the Mud Puddle Challenge! #hopeforharper #rohhadawareness #gomadjumpforrohhad
I LOVE this Beautiful gesture of RDJR! ❤ #robertdowneyjr #dreamcometrueforaaron  #ironman  #rohhadassociation  #rohhadawareness  #aaronneedsironman  Aaron your soooo Beautiful ❤❤❤❤
February 28th is Rare Disease Day and I love a little girl with all of my heart who happens to be Rare.  Kimberly Ann being your Aunt is the GREATEST joy God has ever given me. I am constantly humbled and amazed by the beauty that is your heart and soul. You are a warrior, you're the strongest person I've ever known and will ever know.  In honor of Rare Disease Day let's talk about ROHHAD, if you know what it is I challenge you to bring it up in conversation at least 3 times today to someone who doesn't know what it is. If you don't know what ROHHAD is let's talk! Ask me questions, take a few minutes out of your day to get informed.  Help us help others become educated about ROHHAD.  We fight everyday not only for Kimmy's life but for the lives of the approximately 125 kids who have this diagnosis in the world. We will never stop fighting.  #kimmysfight #kimmysrohhadfight #kimmysfightagainstrohhad #rohhad #rohhadfight #rohhadawareness #rarediseaseday #rarediseaseday2018 #wearyoursupport #getinformed #stopstaringstartresearching

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