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X-WR-CALNAME:National Ataxia Foundation
X-ORIGINAL-URL:https://www.ataxia.org
X-WR-CALDESC:Events for National Ataxia Foundation
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DTSTART;TZID=America/Chicago:20250226T120000
DTEND;TZID=America/Chicago:20250226T130000
DTSTAMP:20250226T021047
CREATED:20250203T155351Z
LAST-MODIFIED:20250203T155837Z
UID:25686-1740571200-1740574800@www.ataxia.org
SUMMARY:NAF Science Showcase: Dr. Hübener-Schmid
DESCRIPTION:CENTRAL TIME ZONE \nExplore a past NAF research grant awardee’s funded study\, gaining scientific insights about their Ataxia research. \nDr. Hübener-Schmid will present the research\, “Development and Validation of a SIMOA-based mutant Ataxin-3 Immunoassay for biomarker studies in SCA3.” \nRegister: Click here.  \nResearch Lay Summary: \nDisease protein lowering are key therapeutic strategies for several neurodegenerative diseases including polyglutamine diseases (polyQ) like Huntington disease (HD) and Spinocerebellar Ataxias (SCA). For polyQ diseases which are caused by a monogenetic mutation\, reducing the amount of the disease-causing expanded disease protein in affected brain regions are predicted to reduce neurodegenerative processes in disease relevant brain regions and therefore\, clinical symptoms as well as slow down disease progression. Currently\, approaches lowering ataxin-3\, the disease protein in Spinocerebellar Ataxia Type 3 (SCA3)\, protein levels are already studied in first clinical phase one studies. Therefore\, highly sensitive and quantitative high-throughput techniques to measure specific low levels of ataxin-3\, the disease protein of SCA3\, in different (easily accessible) body fluids is an important need. Aim of this study was to develop and validate a new ultra-sensitive technique to measure mutant ataxin-3 protein level in easily accessible body fluids like plasma and serum. We successfully developed an SIMOA-based ultra-sensitive immunoassay\, which was able to discriminate between healthy controls and SCA3 mutation carriers by 100%. Additionally\, correlation to clinical data revealed a negative linear correlation between ataxin-3 protein level and age at onset. No correlation was found to clinical scores and disease severity. Therefore\, we successfully developed a new ultra-sensitive technology to measure very low protein levels of the disease protein ataxin-3 in SCA3 in easily accessible bio fluids. \nPast Showcases \nWant to see the recordings of past presentations? Visit www.ataxia.org/showcase to see  upcoming sessions or view past recordings. \n 
URL:https://www.ataxia.org/event/naf-science-showcase-dr-hubener-schmid/
LOCATION:Zoom Webinar
CATEGORIES:Virtual,Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250226T153000
DTEND;TZID=America/New_York:20250226T163000
DTSTAMP:20250226T021047
CREATED:20250106T210528Z
LAST-MODIFIED:20250114T193337Z
UID:25477-1740583800-1740587400@www.ataxia.org
SUMMARY:Johns Hopkins Lets Move Virtual Event
DESCRIPTION:We would like to invite you to join our next virtual series of the Let’s Move exercise and wellness program facilitated by our neurological specialized physical therapists from Johns Hopkins. \nDescription of program: \n·    A virtual group exercise program focusing primarily on balance and movement coordination. \n(Exercises will be primarily in sitting with options for standing tasks pending your ability) \nWho may join: \n·    Individuals with any type of movement disorder \nClass Schedule: \n·    Series 1– (January 15 -February 5) Wednesdays from 3:30-4:30pm ET \n· \n·    Series 2 – (February 12- March 5) Wednesdays from 3:30-4:30pm ET \n·    Series 3 – (March 17- April 14) Mondays from 3:30-4:30 pm ET (Primarily for people with Parkinson’s Disease) \nClick the Link to Register:  https://jhjhm.zoom.us/meeting/register/iT08FhKtQ7-O6O6iMYrz6Q#/registration
URL:https://www.ataxia.org/event/john-hopkins-lets-move-virtual-event-6/
CATEGORIES:Virtual
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250227T150000
DTEND;TZID=America/New_York:20250227T160000
DTSTAMP:20250226T021047
CREATED:20250127T181544Z
LAST-MODIFIED:20250127T181544Z
UID:25676-1740668400-1740672000@www.ataxia.org
SUMMARY:Johns Hopkins -Thrive Together on Thursdays Wellness Presentations
DESCRIPTION:On select Thursdays there will be discussion-based presentations that foster social connectedness and promote overall health and well-being. \nThursday\, February 27 @ 3:00 pm (ET) \n“Benefits of positive affirmations“ \n  \nRegister HERE to attend this presentation and engage in thoughtful discussion on the topic of positive affirmations. \nYour words have power! Positive affirmations can positively impact our mental\, physical and emotional health. \nThis discussion- based presentation will define positive affirmations and how they can be of benefit in your daily life. Feel free to share your thoughts and experiences with applying daily affirmations to help motivate you in your daily life. \n\n\n\n\n\n\n\n\n\nPresenter Bios:\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\nMelissa Egerton\, MS\, is the health educator for the Johns Hopkins Ataxia Center. Her goal is to empower ataxia patients with accessible credible information\, education and resources that enable patients to positively cope with their condition and optimize quality of life.\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n 
URL:https://www.ataxia.org/event/johns-hopkins-thrive-together-on-thursdays-wellness-presentations/
CATEGORIES:Virtual
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250227T180000
DTEND;TZID=America/New_York:20250227T190000
DTSTAMP:20250226T021047
CREATED:20241122T145159Z
LAST-MODIFIED:20250207T170835Z
UID:24915-1740679200-1740682800@www.ataxia.org
SUMMARY:Finger Lakes Support Group
DESCRIPTION:EASTERN TIME ZONE \nSupport group meetings are a great way to socialize and learn with others who are affected by Ataxia. We welcome you to join us! The discussion is led by our volunteer Support Group Leaders\, who are looking forward to helping you connect with others. \n  \nMeeting Information \nLocation: Zoom \nJoin Zoom Meeting\nhttps://us06web.zoom.us/j/82538567177?pwd=T5OOwT7wLxuwE42hGnUZu6iVlN7EmW.1 \n  \nContact Information \nFor more information or to be added to the mailing list for this group please contact: Ashli Wilson ataxiafotfl@gmail.com. \nFacebook Group \nwww.facebook.com/groups/1053369903057929
URL:https://www.ataxia.org/event/finger-lakes-support-group-5/
LOCATION:Zoom
CATEGORIES:Support Group,Virtual
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250227T190000
DTEND;TZID=America/Chicago:20250227T200000
DTSTAMP:20250226T021047
CREATED:20250210T181039Z
LAST-MODIFIED:20250210T181039Z
UID:25741-1740682800-1740686400@www.ataxia.org
SUMMARY:Lower Michigan Support Group
DESCRIPTION:EASTERN TIME ZONE \nSupport group meetings are a great way to socialize and learn with others who are affected by Ataxia. We welcome you to join us! The discussion is led by our volunteer Support Group Leaders\, who are looking forward to helping you connect with others. \n  \nMeeting Information \nMeetings are on the fourth Thursday of the month. \nZoom Link: \nhttps://us06web.zoom.us/j/85747241562?pwd=M0JJV2tHM1g3cGs3TjJ3YlpnRWJMQT09#success \nMeeting ID: 857 4724 1562 Passcode: 860785 \n  \nContact Information \nFor more information\, email Jeremy Sidel at jeremy.sidel1981@gmail.com or Brenda Cavanaugh at bkjgcavanaugh@gmail.com \nDon’t forget to join our Facebook group! https://www.facebook.com/groups/900105314524248
URL:https://www.ataxia.org/event/lower-michigan-support-group/
LOCATION:Zoom
CATEGORIES:Support Group,Virtual
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250228T120000
DTEND;TZID=America/Chicago:20250228T130000
DTSTAMP:20250226T021047
CREATED:20250108T141438Z
LAST-MODIFIED:20250108T141438Z
UID:25528-1740744000-1740747600@www.ataxia.org
SUMMARY:Research and Treatment Development for ARSACS
DESCRIPTION:CENTRAL TIME ZONE \nDuring this session\, our expert will teach us how Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay or ARSACS is studied and give an overview of the current state of research and drug development for the disease. \nRegister: Click here. \nOther Webinars\nNAF hosts educational webinars about Ataxia presented by industry experts. Learn about important topics related to living with Ataxia. Webinars are complimentary for NAF members\, with new sessions offered each month. Join NAF to receive invitations to upcoming Ataxia webinars. Visit www.ataxia.org/webinars to explore past webinars on a variety of topics.
URL:https://www.ataxia.org/event/research-and-treatment-development-for-arsacs/
LOCATION:Zoom Webinar
CATEGORIES:Virtual,Webinar
ATTACH;FMTTYPE=image/png:https://www.ataxia.org/wp-content/uploads/2023/11/Research-Ataxia-Type-Webinar-Featured-Image.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250228T130000
DTEND;TZID=America/New_York:20250228T143000
DTSTAMP:20250226T021047
CREATED:20241216T163719Z
LAST-MODIFIED:20250217T140253Z
UID:25346-1740747600-1740753000@www.ataxia.org
SUMMARY:Western North Carolina Support Group Meeting
DESCRIPTION:EASTERN TIME \nSupport group meetings are a great way to socialize and learn with others who are affected by Ataxia. We welcome you to join us! The discussion is led by our volunteer Support Group Leaders\, who are looking forward to helping you connect with others. \n  \nMeeting Information \nZoom Link: https://us02web.zoom.us/j/86297331619?pwd=NEI4OHhxM1JVZ0hseWg1TmR5b2o4UT09 \nMeeting ID: 862 9733 1619 \nPasscode: 601316 \n  \nContact Information \nJodie Kawa at Phone #: 828-384-8414 or Email: jodiekawa@comporium.net\\nMaggie Dentremont at Phone #: 828-777-7411 Email: magdalenedentremont@gmail.com\nSusan Stinson at susanvstinson@gmail.com\nJoin our Facebook Group: https://www.facebook.com/groups/919905244740316/
URL:https://www.ataxia.org/event/western-north-carolina-support-group-meeting-13/
CATEGORIES:Support Group,Virtual
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250228T150000
DTEND;TZID=America/New_York:20250228T170000
DTSTAMP:20250226T021047
CREATED:20241203T183237Z
LAST-MODIFIED:20250106T204517Z
UID:25031-1740754800-1740762000@www.ataxia.org
SUMMARY:Global Support Group (Hope for Ataxia) 1st Session
DESCRIPTION:EASTERN TIME ZONE \nSupport group meetings are a great way to socialize and learn with others who are affected by Ataxia. We welcome you to join us! The discussion is led by our volunteer Support Group Leaders\, who are looking forward to helping you connect with others. \n  \nMeeting Information \nZoom Link: https://us02web.zoom.us/j/86545261873?pwd=dFBNZkt5U1BIdU40S0dFRHRHTlN4UT09\nMeeting ID: 879 5083 6761 \nPasscode: HFA2020 \n  \nContact Information \nFor more information contact Amy DeLeon at amy@hopeforataxia.org. \nFacebook Group: www.facebook.com/groups/hfacommunity
URL:https://www.ataxia.org/event/global-support-group-hope-for-ataxia-1st-session-11/
LOCATION:Zoom
CATEGORIES:Support Group,Virtual
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20250228T180000
DTEND;TZID=America/New_York:20250228T200000
DTSTAMP:20250226T021047
CREATED:20241204T144419Z
LAST-MODIFIED:20250106T204446Z
UID:25069-1740765600-1740772800@www.ataxia.org
SUMMARY:Global Support Group (Hope for Ataxia) 2nd Session
DESCRIPTION:EASTERN TIME ZONE \nSupport group meetings are a great way to socialize and learn with others who are affected by Ataxia. We welcome you to join us! The discussion is led by our volunteer Support Group Leaders\, who are looking forward to helping you connect with others. \n  \nMeeting Information \nZoom Link: https://us02web.zoom.us/j/86444316165?pwd=MktPdjIzcnFFTmxwT0NKbTlFV1JWdz09 \nMeeting ID: 862 0682 9129 \nPasscode: HFA2020 \n  \nContact Information \nFor more information contact Amy DeLeon at  amydeleon8003@gmail.com. \nFacebook Group: www.facebook.com/groups/hfacommunity
URL:https://www.ataxia.org/event/global-support-group-hope-for-ataxia-2nd-session-7/
CATEGORIES:Support Group,Virtual
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