Top Tweets for #therealHD
Home sweet home! ❤️ I've been traveling for the past couple days for some important stuff, and it's so good to come home to hugs and snuggles from my kids. #itsthelittlethings #huntingtonsdisease #raredisease #DyingToLive #therealHD
Re-sharing my previous post that shows #therealhd and what progression can look like in #huntingtonsdisease. While our disease progresses slower than some others like #ALS, #TimeMatters because #DelayIsDamage to the brain. That damage is irreversible, just as it is in other neurodegenerative #rarediseases. Because our disease in particular is 100% genetic and I am gene-positive, I currently know what my future holds if no cure is found. That's why treatments like #AMT130 and #votoplam matter so much to us - because it buys some of us like myself time we currently don't have. This is why we should #ActWithUrgency.
@US_FDA @FDA_KyleD @KerriHT @houmanhemmati @FDACBER @Help4HDI @HDYOFeed @WhiteHouse @SenRonJohnson @SenRickScott @SenGillibrand @SenateAging @adamfeuerstein @Christina4HD @rachelreising96 @JRenz0418 @hthurgood
For some visual context - here's a video of me and my dad dancing in 2017. The photos are 4 years later right before he passed away in January 2021. This is what progression of #huntingtonsdisease looks like. This is why a sham surgery is unethical in a #raredisease like HD. This is why we cannot wait. #TimeMatters and it's running out for us.
@BeckyQuick @SenRonJohnson @SenRickScott @SenGillibrand @WhiteHouse @realDonaldTrump
Share & submit your awareness video!📣 #HDAwareness Month has only just begun! Bring awareness to all aspects of #HD!💙💜�� #Symptoms, #frustrations, & #resilience of individuals impacted by this #FamilyDisease! #Help4HD #HDAwarenessMonth #THEREALHD
Click here: https://t.co/PtRnR7qrEG
You guys need to follow @hthurgood if you don't already. She and Nathan are just incredible. Thank you for this video for #HDAwarenessMonth, Heather. 💪💙 #huntingtonsdisease #raredisease #therealhd #thishdlife @RepAuchincloss @SenateAging @SenGillibrand @SenRickScott @SenRonJohnson @realDonaldTrump @WhiteHouse
"My feelings impact him"😀Thank you Heather for this astute reminder of #HDCaregivers' significance in their loved one's #HD journey💙💜💙You can be an advocate too! Submit an #HDAwareness video NOW! ~ #Help4HD #HDAwarenessMonth #day4
https://t.co/RYe9szyRQE
"Fear does not stop death. It stops life." 💪💙
#huntingtonsdisease #raredisease #HDAwarenessMonth
#therealhd
Community Connections with #HD Neighbors Near & Far👥Thank you D.j. & Jessica for raising awareness & sharing about our community! Learn how you can be a part of this #HDAwareness campaign!~ #Help4HD #HDAwarenessMonth #day3
https://t.co/RYe9szyk16
Let's put a face to this story. This is @hthurgood's husband Nathan. #huntingtonsdisease #therealhd #thishdlife @SenateAging @US_FDA @FDACBER @fdacder
Today's episode is an #HDUncut episode. I finally had time to sit down and process all that's happened in 2024. It's been a rollercoaster ride.
Take a listen: https://t.co/9LW6lAV8xS
Also listen on iHeart, iTunes, and Spotify. #raredisease #HuntingtonsDisease #Help4HD #TheRealHD
This week's episode was difficult for me to record. I was very emotional, the truth is that we are at war with #HuntingtonsDisease, & there are many layers to it. Take a listen: https://t.co/ocl5WQOcyJ
#raredisease #AtWarWithHD #Help4HDLive #Help4HD #TheRealHD @Help4HDI
The lovely Judy Bradley joined me today to share her story, a great ending to #HDAwarenessMonth. (TW: Suicide was discussed). We really delved into #therealhd. Take a listen! https://t.co/VA7DrH9gmz
What an incredible video of Katie Jackson and her daughter Madison. ❤️ This is absolutely worth the watch. Huge thanks to Sage Therapeutics for making it happen! @Help4HDI #therealhd #HuntingtonsDisease #raredisease #HDWarrior
https://t.co/Glt0qjhJw8
I am so excited about our show this week! John Howard will be joining me for our #HDUncut Series on #Help4HDLive on Thursday at 4 pm ET/1 pm PT. It's going to be great. #huntingtonsdisease #raredisease #therealhd
Make sure to tune in to #Help4HDLive on Thursday at 4 pm ET! Author Christy Dearien will join me to discuss her book "Livable Lives: Conversations with the Huntington's Disease Community". 🙂
#HuntingtonsDisease #raredisease #therealhd #hdstrong
Make sure to tune in TOMORROW at 4 PM ET for the 9th episode of our HD Uncut Series! #THEREALHD #HDStrong #HDUncut #Help4HD
Chris Brown joined Lauren today to talk about being at the age of onset with HD. TW: This is a sensitive topic and may be difficult for some people to listen to. #therealhd #hduncut #hdstrong #prodromalhd #cognitivehd #Help4HD
https://t.co/Xng7TD3Hia
@Help4HDI That it's not like a light switch where one day you're healthy and the next day you're not. That it's different for everyone, so you can't base what your experience will be on the family members who've gone before you. #therealhd #letstalkabouthd
This week, our show is about a pretty taboo topic in the HD community - #Addiction! Make sure to tune in TOMORROW at 4 PM EST for a really informative episode! #hduncut #help4hd #therealhd #breakingthestigma #raretopicsforararedisease #RareDisease #huntingtonsdisease
We have such a powerful show for you today! Katrina Hamel joins me for our 2nd episode of HD Uncut, and she doesn't hold back at all! Take a listen: https://t.co/OKPjYtTe4x
#HDUncut #HDStrong #TheRealHD @Help4HDI
Happy March, Everyone! Here are our line show lineups for both Help 4 HD Live and #Help4HDTV - Here is a direct link to our pages!
https://t.co/rWwNOHaABJ
https://t.co/Ip6sJIzkuH
#Help4HD #HD #JHD #GenerationalTrauma #Chorea #Loneliness #TheRealHD #HDReach #HDBuzz #HDYO #HDUncut
Tomorrow will be our first #HDUncut show, and I'm really excited to have Chris Brown joining me! Make sure to tune in at 4 pm EST for this amazing new series! 😁 #therealhd
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