Providing information about adult-onset leukoencephalopathy with axonal spheroids (ALSP).
Joined July 2021
- Tweets 200
- Following 29
- Followers 35
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Photos and videos
This #ClinicalTrialsDay, we honor brave participants advancing ALSP research. For people with this rare condition, these trials offer hope. Your participation helps all families affected by ALSP, bringing us closer to breakthroughs. Learn more: alspstudy.com/ #ALSPInfo
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This #ALSPAwarenessMonth, we stand with everyone affected by ALSP. Living with a rare disease can be isolating which is why we’re committed to building greater awareness, support and connection. Explore resources on #ALSPInfo
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Check out this In Sickness podcast episode “When Caregivers and Biopharma
Collaborate."
Filmed at Vigil featuring parents & caregivers of a son with a rare leukodystrophy
Caregiver insights = better clinical trials for rare diseases
🎧 lnkd.in/e2hkvhaq #ALSPInfo
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#ALSPAwarenessMonth begins today. ALSP is a rare neurological disease caused by mutations in the CSF1R gene, leading to cognitive decline, movement challenges, and personality changes, often striking adults in their 30s and 40s. Follow us to help build awareness. #ALSPInfo
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Denver bound for AFTD 2025 (May 1-2)! Visit our table to discuss how FTD symptoms often overlap with leukodystrophies like ALSP. Let's talk misdiagnosis challenges and free genetic testing and counseling through ALSPAware. @aftdhope #AFTD2025EducationConference #ALSPInfo
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A look back at last week’s World Orphan Disease Conference where our Cynthia Cassandro moderated the pane: "Addressing barriers in rare hereditary, progressive adult-onset diseases". Thanks to our panelists: End The Legacy, Cure VCP, Sisters' Hope Foundation and Help 4 HD
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#ALSP develops from just one altered copy of the CSF1R gene. As an autosomal dominant condition, a single mutated gene from either parent can trigger this rare adult-onset leukoencephalopathy.
Learn more: alspinfo.com/alsp-genetics #RareDisease #GeneticEducation #ALSPInfo
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Understanding the 5 stages that a drug must progress through before making it to market is useful information to be familiar with, especially as part of the #ALSPpatient journey. Check out our community webinar recording from September to learn more: vigilneuro.com/patients-and-…
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Introducing "SpeakingRare" - our new glossary translating complex terms for the rare disease community! Scientific technical language shouldn't stand between you and understanding your health journey. What terms confuse you? Drop suggestions below! #SpeakingRare #ALSPInfo
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Gearing up for #AAN25 where Vigil will be giving an oral presentation on findings from its ILLUMINATE Prospective Natural History Study and discussing the critical issue of misdiagnosis. Learn more about ILLUMINATE: alspstudy.com/illuminate-stu… #ALSPInfo
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Looking forward to next month's meeting!
5 Dec 2024
#WorldOrphanUSA 2025 panel highlight! "Addressing Common Barriers in Rare Hereditary, Progressive Adult-Onset Diseases" – a discussion between expert speakers from @VigilNeuro, @SistersHopeALSP, @Help4HDI, @End_The_Legacy, & @CureVCPDisease.
Book 60% off: terrapinn.com/bookwodc_tw
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Resharing Erin Sullivan’s #ALSP family's diagnosis story with @PatientWorthy, showcasing the power of community in rare disease advocacy. bit.ly/3OKvXeP #RareDiseaseAwareness #ALSPInfo @SistersHopeALSP
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It’s #BrainAwarenessWeek! As we mark 30 years of this global movement, we are resharing stories from those living with #ALSP and the caregivers who support them. Our voices matter.
Learn more & read their stories: alspinfo.com/living-with-als… #ALSPInfo
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Celebrating the amazing women of #AlexTLC this #InternationalWomensDay! As the only UK charity supporting those affected by leukodystrophy, Alex TLC drives research, raises awareness, improves healthcare & provides vital support. Today & every day, we celebrate you! #ALSPInfo
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ALSPAware offers accessible, no cost, confidential genetic testing & counseling for those with a family history of #ALSP. An early and accurate diagnosis matters and that’s why we’ve partnered with InformedDNA® to provide no cost genetic testing.
informeddna.com/ALSPAware #ALSPInfo
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Today on #RareDiseaseDay, we stand with the 300 million people worldwide affected by rare diseases, including our strong #ALSP community. Together, we're amplifying voices and spreading hope. #ALSPInfo #raredisease #alspawareness #rarediseaseawareness
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To every caregiver who stands alongside the ALSP community – whether you're a healthcare professional, a loving family member or friend – we celebrate you on this National Caregiver Day. You make a difference every single day. Thank you. #NationalCaregiverDay
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Heading to the 2025 GLIA CTN Scientific Meeting next week! Proud to join researchers, clinicians & advocates all united in advancing leukodystrophy care. Together, we're driving innovation for new treatments and brighter futures for affected families. #Leukodystrophy #ALSPInfo
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