Early birds. A packed room of scientists and community members at the 2024 ALS Canada Research Forum. This is an opportunity to hear about the #ALS Canada-funded research.

Part 1: the search for a caregiver #als #roon #caregiver #homehealth

Amidst the chaotic joy of Jazz Fest weekend, the 'big box' arrived at our house.

Sharing this is the scariest thing I've ever done. My story, our story, our raw, human story of living the highs and lows of an extraordinary life, is being released tomorrow. Thank you for reading…

If #AI can really improve productivity, and reduce clinician burnout, shouldn’t it be accessible to all caregivers — and not just those who work in academic medical centers?

Via STAT:

statnews.com/2024/04/29/hea… via STAT

Are you a #Clinician ? Can you foresee being part of a request for an #InvestigationalProduct on behalf of a #Patient ? Join CUPA Working Group and ISCT on 5/15 for a FREE 1-hour webinar covering the whole process—from initial request, IRB and FDA sign off, to dosing.

FDA plans to solicit feedback on its use of advisory committees:

fda.gov/news-events/pr…

Virtual Youth & Teen Advocacy Day offers young advocates (ages 10-18) the chance to explore the legislative process, grow in their advocacy skills, and connect with fellow advocates for rare diseases.

Visit this link for more info to secure your spot: hubs.li/Q02vpTrK0

Yes, THE Jane Fonda and THE Pam Callahan.
Thanks, Michele Dupree
janefonda.com/2009/05/pam-ca…

Rare Neurodegenerative Disease Grant Program is still open until May 6th! Please Share! #Huntingtonsdisease #RareDisease #Research fda.gov/industry/medic…

Network medicine informed multi-omics integration identifies drug targets and repurposable medicines for Amyotrophic Lateral Sclerosis researchsquare.com/article/rs-427…

Over six months to get from grant announcement to first patient receiving EAP? That's a long time... a very long time. #ALSclock biopharmadive.com/news/nih-als-s…

Pfizer includes 'warranty' as part of new gene therapy offering for hemophilia B. biospace.com/article/pfizer…

Tomorrow! Joined by Chelsea Cartwright of the League of Women Voters and Ron Hamm, we’ll discuss the impacts your vote has on the choices of our government.

Please join us and get pumped to get more involved this election cycle!

Profluent Releases AI-Created and Open-Source Gene Editor & More — This Week in RARE Daily. Read: go.globalgenes.org/4dimG8p

#RareDaily #RareNews #WeekinRareDaily #CareAboutRare #RareDiseaseAwareness #GlobalGenes

This seems a tad tone-deaf to me when families dealing with ALS struggle to make ends meet...

interesting opinion piece on campus situations and solutions... and perhaps some solutions that go far beyond campuses...
nytimes.com/2024/04/28/opi…

FDA Announces Home as a Health Care Hub Initiative to Help Advance Health Equity
a new initiative aimed to help reimagine the home environment as an integral part of the health care system.
fda.gov/medical-device…

Trust and medicine...

nytimes.com/2024/04/24/opi…

We appreciate the many scientists, clinicians , and advocates gathering in Toronto this weekend for the ALS Canada Research Forum. Our movement was honored Jean C9orf72 was able to share thoughts on asymptomatic genetic ALS / FTD research in a panel with leaders in the field.

5 Mid-Stage ALS Drugs to Watch | BioSpace biospace.com/article/5-mid-… #jobs