Ataxia

Thank you Mr Secretary  Concerning Social Security payments, my contributions were made for over 45 years on every salary I received. Those jobs may not have always been the work I wanted to be doing at the time,  BUT I always had a job. The Social Security check is now (or soon will be) referred to as a "Federal Benefit Payment?" I'll be part of the one percent to forward this. I am forwarding it because it touches a nerve in me, and I hope it will in you. Please keep passing it on until everyone in our country has read it. The government is now referring to our Social Security checks as a "Federal Benefit Payment." This isn't a benefit. It is our money paid out of our earned income! Not only did we all contribute to Social Security but our employers did too. It totaled 15% of our income before taxes. Congress took our money and used it elsewhere. They forgot (oh yes, they knew) that it was OUR money they were taking. They didn't have a referendum to as...

 I took a very bad fall on Valentines Day. Worst ever.  Three days in the hospital.  Surgery.  Bed pans.  Broken back.  Excruciating pain.  Two months of living in my bed.  Horrible. I was so depressed at some point I couldn’t look at or smell food.  One week of no eating.  Best diet EVER.  Twenty pounds gone.  I would have committed suicide but I didn’t have enough Ambien to do the job nor the courage to use another method. I screamed in pain all the way home from the hospital.  I could not sit up for 2 months. I screamed that life with ataxia was hard enough.  Now this? My message today:  shit happens.  You WILL get through it even when you believe, like I did, that you’ll never get better, you will. My husband (to whom I will be forever grateful for the bedpans etc.) kept telling me I was getting better.  I dismissed him.  I am sorry. Ataxia doesn’t protect you from disaster.  It prepares y...

Dear SCA6 Network Members, Good news! Dr. Gomez, Hannah, and his lab Team submitted a manuscript to the journal Neurology describing the results of the SCA6 and SCA27b electronic surveys and it is now formally accepted! As many of you know, Dr. Gomez has learned from the survey that environmental factors do not seem to explain all the differences in age of onset and severity and he suspects there may be additional genetic factors that contribute. He is collaborating with Dr. Luis Almaguer-Mederos in England to have DNA samples from people with SCA6 sequenced comprehensively to identify other genetic changes that may contribute to symptom onset and progression.  Dr. GOmez and I are planning our next meeting  on June 5th at noon Eastern standard time  and  9 am  west coast and other times in between. We're looking forward to seeing you and I'll send a reminder next week. One of our members might even ask about 'exoskeletons' for human...

Hello,  This is just a reminder that we will be meeting with Dr. Gomez  htis  Friday  Feb. 6th at 10:30 am EST  ( 9:30 am CST ). This is mainly for an update on Dr. Gomez's research but If you have any questions you would like to ask him, please send to me so I cna compile them for him. Best wishes, Terry Theresa Boyle is inviting you to a scheduled Zoom meeting. Join Zoom Meeting https://us02web.zoom.us/j/88072979919 Meeting ID: 880 7297 9919 --- One tap mobile +13052241968,,88072979919#  US +13092053325,,88072979919#  US Join instructions https://us02web.zoom.us/meetings/88072979919/invitations?signature=aJCKoY2Y8trrpIU5zFmiVkUjUnWxjdR0BnJHg3hWtXQ Recent Gomez lab publications (to read them, click on the title to get to the clickable link to Pubmed):   Pre-Frontal Cortical Activity During Gait is Altered in Pre-Manifest and Early Spinocerebellar Ataxia. Mancini M, Silva-Batista C, Shah VV, Horak FB, Carlson-Kuhta P, Safarpour D,  Gomez CM. ...

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...

 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?

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...

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...

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

Dear SCA6 Network Members, Good news, after a summer break, the Fall SCA6 Network Zoom research meeting with Dr. Gomez is now scheduled for  Friday Sep 19, 2025  ⋅  12pm – 1pm  (Eastern Time - New York). You can look forward to  an update on the SCA6 research progress  by Dr. Gomz's team , particularly  the analysis of the SCA6 electronic questionnaire, and there may also be time to ask Dr. Gomez a few questions. I will try also sending the Zoom link directly to your calendars but it is only compatible with some calendar types. If you don't get the calendar link, please just copy and paste this meeting link into your calendar yourself. I will try to send a reminder the week and day before the meeting. You can join by clicking the link on your computer or calling the number below and putting in the meeting ID by phone. The password is 123. The meeting is  12 pm  east coast,  11 am central ,  10 am mountain , ...

Dear SCA6 Network Members, I hope you are having a good summer! I've been thinking recently about how great wheels are and wonder if any species other than ours uses wheels as a tool.  When moving homes, there is nothing like a hand truck or a dolly for heavy boxes and furniture; people love their cars, including some that can self-drive these days, bikes, skates, and scooters; most offices have desk chairs with wheels; but then somehow 'wheelchairs' are not as glorified. Tammy Schumann wrote a wonderful book titled "Scooter Sagas: Coping with Ataxia" describing her journey to more outdoor freedom with her scooters. The ataxia resource and discussion group (AR&DG) had a session discussing how to best travel with ataxia which definitely involved wheels. I was walking through an airport security line in Denver, CO last week thinking about how quickly so many people were walking the mile of roped aisles, back and forth, and how if anyone had any trouble walking h...

 

 I just read a post on Facebook that neurologists  are useless.  My response was that if you can do it, go to a research hospital like Chicago or Florida to meet doctors who know ataxia.  Many neurologists can go their whole career without seeing a single case of ataxia.

 Still filled with rage.  My psychiatrist put me on Lexapro added to the Wellbutrin.  It made me so sick that I weaned myself off to see if the daily nausea and headaches would subside.  Please has anyone had this experience?

Dear Members, Happy Spring!  I hope you all are doing well. I just wanted to provide a couple updates and share about a few opportunities. Dr. Gomez's laboratory is busy analyzing the SCA6 questionnaires that so many of you have participated in, thank you. His lab already has a couple publications just this year in PubMed: Longitudinal Changes in Patient- and Clinical-Reported Outcomes in Early Spinocerebellar Ataxia Types 1, 2, 3, and 6 from the IDEA Study Jan 2025: Describes how certain patient reported outcome measures can measure changes after 2 years, but that more sensitive measures of change are still needed to measure change over shorter lengths of time. https://pubmed.ncbi.nlm.nih.gov/39876568/ Reliability of remote video ratings of the scale for assessment and rating of ataxia March 2025: Describes how assessment of SARA ( Scale for Assessment and Rating of Ataxia) can be performed accurately by video. This is good news for those of you who want to get a SA...