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The amazing people I’ve met 💜

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The information I collected about Huntington’s Disease 

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The information I collected about Huntington’s Disease 

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I’m so grateful for the HD community for bringing so much light and love into my life ❤️ this community changed my life.

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The conferences I had the chance to attend

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The conferences I had the chance to attend

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For all the peer support our community offers and how warmly it welcomes everyone. 

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For all the peer support our community offers and how warmly it welcomes everyone. 

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For my HD family all over the world💙

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I'm grateful for the people who have worked so hard to ensure that none of us ever feel alone.

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Grateful to have been involved with the incredible HD community.

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Olen äärimmäisen kiitollinen lääkäreille Jussi Sipilä ja Mika Martikainen. Lääkäri Sipilä vastasi puolisoni taudin alkuvaiheessa meille omalla ajallaan kysymyksiin, joihin ei muualta löytynyt vastausta, ja teki sen erittäin empaattisesti. Emme siis olleet edes hänen sairaalansa alueella eikä puolisoni hänen potilaansa - vastaukset saimme siitä huolimatta. Lääkäri Martikainen puolestaan hoiti puolisoani paremmin kuin yksikään hänen jälkeensä tullut. Tätä parempaa komboa alkuvaiheen shokkiin tuskin Suomesta löytyy. Iso, lämmin kiitos.

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I am grateful for meeting so many strong, supportive and determined people who do their best to live with, but also fight this disease and keep the hope up that one day there will be a cure

🩵💜

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Having a parent with HD is by far the hardest thing I have gone through so far in life. Everything about it is hard- finding adequate and willing care, watching the disease progress, losing the person you knew, advocating for the rights of a person with HD, balancing my life while making sure He is still involved and doesn’t miss anything and so so much more. I’m so grateful though that I don’t do this alone. There is a saying in the Huntingtons community - “family is everything”. It’s so true. My siblings and I (& our spouses) have been my dad’s primary caretakers throughout the beginning stages of his disease. Dad is currently in transition of a new facility that can better assist him, but up until this point, we were his main point of contact. We have gone through some really tough and stressful times. During these times, we had so many friends and family in our corner rallying with us. The encouragement and care for our family from everyone in our lives and dad’s life is overwhelming and appreciated beyond words.

I am so grateful and thankful for everyone that helps and reaches out. I am especially thankful for my siblings, my best friend, all of my family, and friends. We aren’t alone in this fight.

It’s a tough disease, one I wouldn’t wish on anyone. One I especially would never wish on my dad- my hero and the most deserving man of every good thing in life. “And we know that for those who love God all things work together for good, for those who are called according to his purpose” Shout out to Abby and Sarah for always reminding me of this promise in Roman’s.

The fight against Huntington’s disease is far from over. Watching my dad live with HD has shown me just how far we still have to go—not only in finding a cure, but in ensuring patients receive the care and dignity they deserve. My dad had to sit in a hospital for weeks, waiting for a facility that would accept him. Weeks of waiting—not because he didn’t need care, but because so few places are equipped or willing to support people with Huntington’s. That’s not acceptable. Families like mine are left to navigate this devastating disease with far too little help and resources. I’m sharing to show gratitude, to raise awareness, demand better, and honor the resilience of those living with HD. My dad deserves better. They all do. We owe it to those currently battling HD—and to those we’ve lost—to keep pushing for research, for compassion, and for change.

Thanks for reading my HD journal entry for the day 🫶🫶

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Olen kiitollinen kaikista yhteisömme ihmisistä, jotka olen eri tapahtumissa tavannut viimeisen 30-vuoden aikana, osan kerran ja osan useamman kerran.

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I'm grateful to have met inspiring people with HD 🫶

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•My health and resiliency

•My husband, friends, and family

•The AMAZING HD community 🫶🏻

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All the new companies working in HD research

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Grateful for people across this world who might never need to me to connect on a deeper level than we do with people we've known our whole lives. HD families and their experiences are an invisible bridge, one you can meet on midway and feel completely seen and understood. On my hardest days, talking to someone who understands this experience makes life a little easier. A little goes a very long way. So I'm grateful for every person I've met in this community, it's such a gift to be a part of it 💙