Posts

Update meeting with Dr. Gomez

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Dear SCA6 Network Members, I would like to invite you to attend a follow up meeting  on Friday October 24th  with Dr. Gomez as discussed at our last meeting to talk more about the logistics of performing a genome wide association study (GWAS) for SCA6. His colleague in England is conducting this study and it is designed to analyze DNA from people with SCA6 to better understand genetic modifiers beyond the CACNA1A gene that might alter risk for disease onset, symptoms, and severity. Please see the meeting link below and otherwise instructions are the same as last time to join. I also wanted to share this link to an incredibly motivational video that was shared with me by Robert Dean as the culmination of a creative project involving many members of our sister group the Ataxia Resources and Discussion Group. You may recognize some of the courageous people in this videa. It certainly inspired to get up and get moving.  https://www.youtube.com/watch?v=c0uvVySQ_5o&t=43s Be...
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Surgery for double vision?

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 Have any of you had this? The eye is controlled by six muscles.  Those of you with ataxia have problems with coordination of muscles.  Did you think it was restricted to limbs?  Those of us with extreme double vision have problems with coordination of the muscles as well. I’m beginning to explore the possibility of this surgery.  Do any of you have experience with this?
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Yoga therapy 9/29

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Hi Everyone, Susan is inviting our SCA6 Network group to join her AR&DG Zoom group for yoga on Monday with Shannon Reeder, a certified yoga instructor. If you are interested, please see Susan's message below. Topic: Yoga Therapy by Shannon Reedy Time:  Sep 29, 2025 03:00 PM Eastern Time  (US and Canada) Join Zoom Meeting https://us02web.zoom.us/j/2276674020?pwd=2Q5SNLyrcGDw9hp0Xt6xkvsonFeNo8.1&omn=81312156639 View meeting insights with Zoom AI Companion https://us02web.zoom.us/launch/edl?muid=08b86098-b164-41a9-b1a7-80c96fda5e76 Meeting ID: 227 667 4020 Passcode: ataxia --- One tap mobile +13017158592,,2276674020#,,,,*950030#  US ( Washington DC ) +13052241968,,2276674020#,,,,*950030#  US Join instructions https://us02web.zoom.us/meetings/81312156639/invitations?signature=amoH3Df3hmmicLFHHJtpAmlwG_MuhjsGiEDoTzeJ2kY Hi all: This  coming Monday , we will be having Shannon Reeder, a registered yoga teacher, give us an introduction of yoga therapy and s...
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Good news on gene therapy for Huntington’s

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uniQure  N.V. (NASDAQ: QURE), a leading gene therapy company advancing transformative therapies for patients with severe medical needs, today announced positive topline data from the pivotal Phase I/II study of AMT-130 for the treatment of Huntington’s disease. The study met its prespecified primary endpoint, with high-dose AMT-130 demonstrating a statistically significant slowing of disease progression as measured by the composite Unified Huntington’s Disease Rating Scale (cUHDRS) at 36 months compared to a propensity score-matched external control. The study also met a key secondary endpoint by achieving statistically significant slowing of disease progression as measured by Total Functional Capacity (TFC) at 36 months compared to a propensity score-matched external control. https://uniqure.gcs-web.com/news-releases/news-release-details/uniqure-announces-positive-topline-results-pivotal-phase-iii Although this is not for SCA6, successful one-time administration of gene therapy (a...
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SCAM!!!

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 Don’t purchase x39 patches.  They are marketed as helping balance.  Nothing more than a placebo and a high level scam.
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