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It was our humble honor to speak to Genentech yesterday — a biotech company leading the efforts on a drug shown to slow the progression of #huntingtonsdisease . We shared ours and our Mom’s story, which is a story so similar for so many others affected by this disease. We spoke for her, as she can no longer share it herself. We are praying and cheering for the work Genentech is doing to help those affected by #hd , and grateful to be able to represent our family and so many others affected by this disease. Yesterday gave us a lot of hope. This one’s for you, Mom. ..... A special thank you to our amazing cousin @hdkingston for helping to get us to yesterday, and the amazing teams at Genentech for all they are doing for this community. ..... If you want to learn more about our family’s story, we’ve created the #kiselickkrusaders hashtag to document our journey. If you are moved to donate to this cause, please use this link to share your contribution — https://hdsa.donordrive.com/index.cfm?fuseaction=donate.event&eventID=1645 —————— ..... #curehd #kiselickkrusaders #huntingtonsdiseaseawareness #kiselickkrusade #hopeforhd #curehd #helpcurehd #hdsa #familyiseverything
May is #huntingtonsdiseaseawareness month.
Huntington’s disease is a devastating neurological disorder that happens to run in my family.
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My mom is now in late stages of the disease progression. For almost a decade I’ve been her primary caregiver and have watched her slowly decline into this state- she is now completely bedridden and unable to talk. ...
Throughout this month I will be sharing parts of my life and experiences with HD through my social media accounts to spread awareness and offer support to other people that are impacted by HD. ... Stay strong everyone- as I’ve found that’s the only choice that makes sense. It’s ok to cry, feel sad and overwhelmed, but find the strength you need to be able to do what is needed for yourself and the people around you. ... #hdawarenessmonth #huntingtonsdisease #caregiving #caregivinglife #geneticdisorder #geneticdisease #yogateacher #yogatherapist #yogaforlife #strengthenyourself #selfcare #liveyourpractice #liveyourpurpose #huntingtonsdiseaseawarenessmonth #torontoyogi #torontoyoga #letsdothis #hdstrong
I have been struggling with posting this picture. I was going to post this picture here with a caption about how thankful I am and what a nice Easter I had with this guy but it hasn’t been sitting well with me and here’s why. I started this separate account to be transparent about my struggles with Huntington’s Disease. I am here to show you the really terrible and really amazing things that happen in my life along the way. People on here look at me as an open book- and if that’s not how you’re comfortable seeing me, then please unfollow me (no hard feelings, there’s a reason I have two accounts). Here’s the truth about my Easter this year and the past month of my life in general: therapy is bringing out emotions and grievances in me that I never knew existed. That I have not been sure how to put into words for you. Although I am so proud of myself for showing up to counseling each week, it brings on periods of darkness throughout my days that are crippling. This is all part of the healing process so I am just letting myself feel them. Even if it means the darkness hits you right in time for Easter dinner in a room full of people you barely know, and crying for the duration. Up and down, highs and lows, happy and sad, I’m feeling it all right now, and this guy has not wavered in his love for me. I still can’t believe I get to live this life with him by my side. Guys, keep showing up to fight your battle each day and start learning how to fully appreciate each day- even ones where you feel like tomorrow will never come. (Hint: it will)
Meet two sweet boys who were born with the help of PGD-IVF! These boys parents vowed the HD gene would stop with them, no matter what that meant for them having children. It wasn’t easy but it was worth it. We can’t wait to give this amazing gift to other families! Our first grant cycle ends April 30th! Apply now at HelpCureHD.org
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#hchd #huntingtonsdiseaseawareness #huntingtonsdisease #hd #huntingtons #helpcurehd #awareness #hdawareness
Tomorrow is the NYC Marathon & we are so grateful to so many people who helped the #kiselickkrusaders Team to raise $40,000, part of $111,000 total raised, for the Huntington’s Disease Society of America — funding research for a cure, and awareness for HD. 421+ miles trained....26.2 to go. #hdsa #curehd #hdsafamily #nycmarathon2018 #nycmarathontraining #huntingtonsdisease #huntingtonsdiseaseawareness