My Complex Genes
My Complex Genes is focused on raising awareness, research and connecting the ALSP / CSF1R community.
06/17/2023
Recent ALSP / CSF1R News:
University of Pennsylvania
* Dr. Jennifer Orthmann-Murphy is running a natural history study.
* I also understand Penn will soon be a site for the Vigil Study.
* I have reached out to Dr. Orthmann-Murphy to better understand her study versus the work Dr. Wszolek has done at Mayo
University of California, Irvine
* Hosted an ALSP community conference in March with intention to hold this conference annually.
* Dr. Blurton-Jones is in early stage research using a new mouse model of ALSP and transplantation of stem cell derived microglia.
* I have reached out to Dr. Mathew Blurton-Jones to see how we can expand outreach. I am supposed to connect with him at the end of this week.
Massachusetts General Hospital
* Dr. Eichler is starting gene therapy research. Please reach out to his office to set up an appointment or with questions.
Vigil Neuroscience
* Now offering free genetic testing.
* Recent investor news and presentations which may be of interest.
https://investors.vigilneuro.com/news-releases/news-release-details/vigil-neuroscience-reports-first-quarter-2023-financial-results
https://investors.vigilneuro.com/events/event-details/vigil-announces-vgl101-phase-1-topline-results
https://investors.vigilneuro.com/events/event-details/2022-alsp-kol-event
Inherited Adult Onset Neurodegenerative Disease Community
* Have connected with leaders in Huntington's, ALS FTD, AD, VCP.
* Vigil has expressed interest in leveraging this group of activists to help raise awareness.
* A few months back I spoke with the Chief Medical Officer of GeneDx about getting CSF1R on the dementia panel. They were unwilling to discuss but certain physicians have mentioned attempting again.
* I am next looking to connect with AFTD, GeneDx (again) and Invitae.
Vigil Neuroscience Reports First Quarter 2023 Financial Results and Provides Business Update — Vigil Neuroscience, Inc - Partial clinical hold lifted by FDA on VGL101 - - Launched ALSPAware to provide access to no-cost genetic testing and counseling for ALSP - - Appointed distinguished biopharmaceutical industry leader, Samantha Budd Haeberlein, Ph.D., to Board of Directors - - Interim data from IGNITE Phase 2
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