Cure GM1 Foundation
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Cure GM1 Foundation
@curegm1.bsky.social
13 followers 9 following 390 posts
The only 501(c)(3) nonprofit entirely dedicated to GM1 gangliosidosis, a fatal neurological disease that primarily impacts babies and children.
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curegm1.bsky.social
It is with a heavy heart that we at the Cure GM1 Foundation share the loss of Dr. David Whiteman. Dr. Whiteman served as a volunteer clinical and data sharing advisor to the Cure GM1 Foundation since 2024.

#curegm1 #RIP #medicine #genetics
January 29, 2026 at 2:38 AM
curegm1.bsky.social
It is with a heavy heart that we at the Cure GM1 Foundation share the loss of Dr. David Whiteman. Dr. Whiteman served as a volunteer clinical and data sharing advisor to the Cure GM1 Foundation since 2024.

#curegm1 #RIP #medicine #genetics
January 29, 2026 at 2:35 AM
curegm1.bsky.social
Rare Disease Day and Rare Disease Month is coming up!

Support the fight against GM1 with increased awareness and funding for research.

SWAG: curegm1.org/gm1-store

MAKE: twb.nz/rddgm1

MORE: curegm1.org/rare-disease-day

#curegm1 #raredisease #charity #awareness #hope
January 28, 2026 at 5:16 PM
curegm1.bsky.social
Mail info@curegm1.org with a photo if you would like assistance to create a profile image.
MAKE: twb.nz/rddgm1
MORE: lnkd.in/gvQdMi4e
#curegm1 #awareness #raredisease #community #hope
January 27, 2026 at 4:34 PM
curegm1.bsky.social
Behind every strong special needs couple is a partnership built on patience, sacrifice, and unconditional love. Today we honor that and recognize the challenges of families facing rare diseases.

#curegm1 #raredisease #spouses #respite #couples
January 26, 2026 at 4:32 PM
curegm1.bsky.social
Join us in urging your Senators to support the funding package and reauthorize the Rare Pediatric Disease Priority Review Voucher Program. NOW is the time to push again.

everylifefoundation.quorum.us/campaign/110...

#curegm1 #raredisease #senate #takeaction #prv
January 23, 2026 at 4:55 PM
curegm1.bsky.social
Rare Disease Day is coming up!

Support the fight against GM1 with Cure GM1 swag. Every purchase helps drive awareness and research forward.

Shop. Wear. Advocate: curegm1.org/gm1-store

#curegm1 #raredisease #charity #awareness #hope
January 22, 2026 at 6:29 PM
curegm1.bsky.social
The lived experience of GM1 matters. When caregivers share openly, we create connection, awareness, and community in spaces where voices are often unheard. Together, we turn isolation into solidarity.

JOIN on FB: tinyurl.com/28psn6ey

#curegm1 #hope #caregivers #community #raredisease
January 21, 2026 at 3:58 PM
curegm1.bsky.social
Finding support and reliable information after a devastating diagnosis can feel overwhelming—that’s why resources matter.

👉 Visit: curegm1.org/gm1-family-resources

#curegm1 #raredisease #community #guidance #hope
January 20, 2026 at 4:18 PM
curegm1.bsky.social
Yum! Chocolate, a gift, and an amazing cause.

SHOP for GOOD: tinyurl.com/mwr9kr9u

#curegm1 #hope #nonprofit #charity #give
January 18, 2026 at 5:45 PM
curegm1.bsky.social
Yum! Chocolate, a gift, and an amazing cause.

SHOP for GOOD: tinyurl.com/mwr9kr9u

#curegm1 #hope #nonprofit #charity #give
January 18, 2026 at 5:43 PM
curegm1.bsky.social
Did you know that the majority of rare diseases lack a dedicated patient advocacy group? This leaves many individuals navigating diagnosis, care, and research without a community.

MORE: curegm1.org/take-action

#curegm1 #raredisease #fightforlife #hope #change
January 17, 2026 at 6:19 PM
curegm1.bsky.social
It's time to get ready for Rare Disease Day by ordering your awareness gear in time for the big day next month. New designs are now available!

SHOP NOW: curegm1.org/gm1-store

#curegm1 #raredisease #hope #awareness #advocacy
January 16, 2026 at 4:53 PM
curegm1.bsky.social
We’re committing $1.4 million toward enzyme replacement therapy (ERT) this year alone which is the largest investment in a single project that Cure GM1 has ever made.

READ MORE: conta.cc/4qpSZYV
PROJECT: curegm1.org/ert-project
GIVE: curegm1.org/donate

#curegm1 #hope #drugdevelopment #give
January 15, 2026 at 4:25 PM
curegm1.bsky.social
Our unwavering commitment over time is necessary to make truly meaningful progress to advance research, drug development, awareness, and advocacy. Will you join us in our fight?

LEARN MORE: curegm1.org/ert-project
#curegm1 #raredisease #joinus #takeaction #hope
January 14, 2026 at 4:12 PM
curegm1.bsky.social
This year, you can help change lives.

Every show of support brings us closer to hope, progress, and chances at life.

Learn more or support the ERT Project: curegm1.org/ert-project

#curegm1 #raredisease #community #hope #nevergiveup
January 13, 2026 at 4:26 PM
curegm1.bsky.social
Will you make a plan for Rare Disease Month? Together, we can raise awareness, amplify rare voices, and show the world the incredible need for support for all those impacted by rare diseases.

MORE: curegm1.org/rare-disease-day

#curegm1 #community #raredisease #advocacy #join
January 12, 2026 at 4:00 PM
curegm1.bsky.social
"Losing a child is like losing a piece of your own soul. It changes you forever." -Anonymous

May sweet little Josias rest in peace and may his family find comfort at this heartbreaking time.

#curegm1 #raredisease #childloss #grief #sweetangels
January 11, 2026 at 6:08 PM
curegm1.bsky.social
A very happy belated birthday to Darian!

Read his story here: curegm1.org/darians-story

#curegm1 #birthdays #advocacy #hope
January 10, 2026 at 4:51 PM
curegm1.bsky.social
A new initiative. Sign up for the newsletter to follow the rare disease news there.
www.cnbc.com/2026/01/08/c...
CNBC launches CNBC Cures to help 30 million Americans with rare diseases
CNBC Cures aims to raise awareness of rare diseases. Led by "Squawk Box" anchor Becky Quick, CNBC Cures was inspired by her family's own rare disease journey.
www.cnbc.com
January 10, 2026 at 1:26 AM
curegm1.bsky.social
The GM1 Census brings the global GM1 community together to share data that drives research, improves understanding of GM1, and attracts scientific and biotech interest.

SEE: curegm1.org/census

#curegm1 #research #hope #drugdevelopment #patients
January 9, 2026 at 4:32 PM
curegm1.bsky.social
Cure GM1 is a multi-faceted organization with a wealth of experience in a broad variety of domains, garnering public recognition, awards, and contributing to the scientific understanding of GM1.
curegm1.org/take-action

#curegm1 #research #advocacy #give #hope
January 8, 2026 at 4:18 PM
curegm1.bsky.social
Ongoing commitment and persistence are very much needed to make a meaningful difference for all those dying due to GM1. Please consider becoming a monthly donor. We have a new option below which offers no fees and a recurring giving.

SETUP: tinyurl.com/sevn3jjr

#curegm1 #hope #raredisease
January 7, 2026 at 5:19 PM
curegm1.bsky.social
Cure GM1 is putting “Hope in Motion!” with continued efforts to
accelerate progress for GM1.
READ: curegm1.org/january-2026-cure-gm1-catalyst
Subscribe: tinyurl.com/2v3n3ab2

#curegm1 #raredisease #nonprofit #getinvolved #donate #charity
January 6, 2026 at 4:30 PM
curegm1.bsky.social
Thank you for all the love and support throughout 2025. We couldn’t do this without you, and we’re excited for a new year and the progress to be made together.
#curegm1 #raredisease #community #advocacy #hope
January 4, 2026 at 3:20 PM