hdawareness


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👨‍👧💙This month for Huntingtons Disease Awareness month we are being urged to share our experiences & talk about HD for awareness so that others are better able to understand and support HD families with the motto being #LetsTalkAboutHD 🗣 As May is coming to a close its time I contributed as HD has been one of the biggest impacts on my life. ⚔️HD has been described ‘the cruellest disease known to man’ & has been described as 'having Parkinson's, Alzheimer's & ALS SIMULTANEOUSLY.' 👨‍👧‍👧My dad NEVER gave up hope & donated everything he could (his body for experimental research) to try to find a cure for others. There is still no cure. ⚔️ I may be unlucky to grow up in a family with a short lifespan, but I am lucky 🍀 enough to grow up with a ‘SUPERMODEL’ (super-ROLE-model) father, showing what it truly looks like to be totally selfless and to never, ever give up on what you believe in. 💪 My father passed away too young like my aunties whom it was heartbreaking to see get sick, and the grandfather I never got to meet. 💒But he still finds a way to remind me of my purpose in life, and gives me strength to persist.🙏 Growing up with HD & being at 50% risk was stressful and riddled with anxiety, every time I did something dumb like lost my keys or tripped or dropped something I would be convinced it was the start of my symptoms & I was starting to get sick too. 🤦🏼‍♀️I hated the thought of my independence being taken away & anyone having to take care for me so I would push people away and retreat to be alone even more.🙅🏼 🔴This final week of May (HD Awareness month) PLEASE HELP STOP HD for future generations by taking just a couple of minutes to sign the petition📝 to make predictive testing for HD Medicare funded for affected families (link is above in my description).🤞Nobody deserves to go through this. So much appreciated. SL X😘😘 #Huntingtonsdisease #HD #LetsTalkAboutHD #HDawareness #Mentalhealth #HDawarenessmonth #geneticdisease #huntingtonsdiseaseawareness #HDAwarenessMonth #STOPHD #StopHDthroughPGD #familyfirst #nevergiveup 117 ♡ 10 ✍ May 27

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Day TWENTY-SIX of Awareness Month. Here is a picture of my super determined Mom. If you have kept up with my other posts, you would know that my mom was super intrigued by technology and that she used to work with computers before HD. My sister and I wanted her to try typing again and even though she pressed a few extra letters, she got the message across! 💙👏🏼••••• #family #mom #rip #hd #huntingtons #huningtonsdisease #awareness #awarenessmonth #hdawareness #hdawarenessmonth #typing #motivation #inspiration #rolemodel #teamhope #findthecure #support #genetic #hereditary 41 ♡ 1 ✍ May 26

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So, about that trip to Rome...Those of you who know me well know about my family's history with Huntington's disease (HD). My mother passed away in 2014 from complications related to HD and 3 of my 4 siblings have tested positive . Pope Francis held a special audience for the Huntington's disease community that featured 26 different countries and I was so very fortunate to attend this inspirational movement. This event, #hddennomore , was about raising awareness for HD as well as removing the stigma that is often associated with HD. Thank you so very much #popefrancis and the entire #hddennomore team. If you want to know more about Huntington's disease, contact hdsa.org. #letstalkabouthd #curehd #vaticancity #popefrancis #curejhd #hdawareness #advocacy #hdsa #vatican #strongertogether #pontiff #pope #rome #hope #roma #papafrancisco #vaticano #knowledgeispower #pontifex #staystrong #solidarity #francesco #familyiseverything #italy #popeaudience 31 ♡ 2 ✍ May 26

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#tbt to Omaha and the Easton Memorial Poker Run💙 MSG us for details to support if you're in the omaha area this June 3rd! 😀 #omaha #hopeforhd #hdawareness #hirschsprungdisease #hirschsprungs #digitalhealth #doctors20 #raredisease #raisewareness #fundraise #donate #pokerrun 16 ♡ 0 ✍ May 25

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The 3D #Toronto sign in #NathanPhillipsSquare is #blue and #purple for #Huntingtondisease #awareness! More sites lighting up the rest of the month at the link in our bio. #LightItUp4HD in #Toronto #Ontario. Share your pictures with #LightItUp4HD. #potd #vsco #nonprofit #potd #instagood #hdawareness #huntingtonsdisease #huntingtonsociety #canada #yyz #advocacy #disease #416 73 ♡ 2 ✍ May 25

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A Story of (My Story As) An Enabler. "Perhaps, though, we, the enablers, are creatures just as broken and bereft as the individuals we try to protect. Desperate victims in a dark-shrouded world, who cannot see a way out of the darkness." Link in profile. #huntingtonsdisease #hdawareness #hdsa @redbudwriters 10 ♡ 0 ✍ May 25

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We're at Emigrant Recreation Park in Ashland Oregon enjoying the lake and having some downtime. Our new RV is working great and it's so much easier for John to maneuver. #hd #hdawareness #WatchingTheirDance #cure4hd #HDSA 9 ♡ 1 ✍ May 24

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You told us & here they are! YOUR tips n' tricks from our Facebook back to you! 😀💚👍🏻 #advice #hopeforhd #hdawareness #hirschsprungs #hirschsprungdisease #hd #reach #digitalhealth #doctors20 #fun #helpful #education #information 19 ♡ 2 ✍ May 24

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Wow! $12k! We are so incredibly thankful to everyone who's donated to our spring campaign! 😊😊💙💙 #thankyou #donate #spring #fundraise #flowers #photooftheday #hopeforhd #hdawareness #hirschsprungs #hirschsprungdisease #digitalhealth #doctors20 #igersdaily #igers #igersaddict #instagood #instagram 11 ♡ 0 ✍ May 24

ig  instagram

Day TWENTY-FOUR of Awareness Month is a very special one because it is my Dad's birthday! He was the main caregiver for my mom. He taught my sister and I how to grow up, how to be strong and brave, and most importantly how to love. We learned that by his example of the extreme love between him and my mom despite the fact that she could not show that same love and affection back. They met when they were 18 years old and he was there until the very end and would do it all over again. Without him, my mom was able to be surrounded by all the things she loved in her own home instead of a nursing home. He took my sister and I on trips, and made us have the closest thing to "normal" we possibly could and turned every bad situation into a good one. He is my hero, inspiration and motivation in life. Happy Birthday Dad! I love you! And thank you for everything! 💙😊😘 46 ♡ 3 ✍ May 24

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#sybilontour enjoying her #coffee in #dolceandverde #leicester raising #hdawareness 20 ♡ 0 ✍ May 24

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Introducing #sybilintour to her new syblings look forward to following their adventures stateside and beyond xxx "Sybil's Americanized litter mate Lexi will be at all HDSA/OC events!!! Isn't she adorable? #sybilontour #hounds4huntingtons #LetsTalkAboutHD" #hopeforhd #hdsa #hdawareness @hdyofeed 15 ♡ 1 ✍ May 24

ig  instagram

Gathering after Papal audience for the #HuntingtonsDisease (HD) community at The residence of Sally Axworthy, British Ambassador to the Holy See. #Thankyou for hosting us. This was a very important day for the HD global community as it was the very first time in history a #Pope publicly recognised the devastating disease and the hardship it causes on those who suffer from it and their families. This event was made possible by the extraordinary effort by #CharlesSabine and the #HDdennomore coalition 👏🏻👏🏻 The fight however is far from over, there is still a lot of work to be done and the HD community needs your help. This community has suffered in the darkness for far too long and its time for that to end. Please take a minute to check www.hddennomore.com and google Huntington's Disease to learn about this terrible condition that affects thousands of people across the globe. Get a hold of your closest Huntington's Disease association and find a way to get involved, donate and/or spread the word. Please let's help raising awareness of HD. Every little helps 🙏🏼#hdawareness #teamhda #huntingtonsdisease #nancywexler #hddennomore #venezuela #maracaibo #rome #europe Reunión después de la Audiencia Papal para la comunidad global de #CoreadeHuntingtons #huntingtonsdisease (HD) en la residencia de Sally Axworthy, Embajadora Británica ante la Santa Sede #Vaticano. #Gracias por recibirnos. Este fue un día importantísimo para esta comunidad ya que fue la primera vez en la historia que un #Papa públicamente reconoció esta devastadora enfermedad y el gran sufrimiento que esta causa en los que la padecen y sus familiares. Este hecho fue posible gracias al extraordinario esfuerzo hecho por #charlessabine y la coalición #hddennomore 👏🏻👏🏻. La lucha sin embargo no ha terminado, todavia hay mucho trabajo por hacer y la comunidad de HD necesita tu ayuda. Esta comunidad ha sufrido en la oscuridad por mucho tiempo y ya es hora de ponerle un fin. Ayudemos a esta comunidad 🙏🏼 164 ♡ 7 ✍ May 24

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Awesome time this past weekend in Pittsburgh watching and racing some fast cars with life long friends and some brand new ones! And it was all for a great cause in raising awareness and money to cure Huntingtons Disease. #curehd #hdawareness #fasttrackpgh #pittsburgh #blackandyellow 60 ♡ 0 ✍ May 24

ig  instagram

What gives me HOPE 💙💜 I am only allowed a minute, and I could have gone on for hours. I am so grateful and have so much love for everyone in the HD community 💙💜 keep being amazing!!! #whatgivesmehope #hdyo #nya #ypahd #curehd #curejhd #neverstopfighting #hdawareness #mystrength #ionlyhadaminute 124 ♡ 9 ✍ May 24

ig  instagram

5 more sleeps!!! I can't believe it's so soon. This Sunday I'll be running a 1/2 marathon in the #ottawamarathon to raise money and awareness for Huntington Disease. I want to thank everyone so much for the amazing support! I didn't mention before, but every dollar raised for HD will be doubled by an anonymous donor over the month of May. If you'd like to contribute, you can donate by clicking the link in my bio. 💙✌️💙 #ottawamarathon #runottawa2017 #halfmarathon #curehd #hdawareness #hdawarenessmonth #huntingtondisease #runforacure 56 ♡ 1 ✍ May 23


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