“Loved beyond words, missed beyond measure.” May sweet Ravi rest in heavenly peace. #curegm1 #childloss #sweetangels #raredisease

Daxton was a joyful little boy whose life was tragically cut short by GM1 gangliosidosis, a rare and terminal genetic disease. Read Daxton’s story and help bring hope to families fighting GM1: curegm1.org/daxtons-story-2 #curegm1 #awareness #raredisease #genetics #charity

Thank you to our amazing community for the incredible submissions to our Rare Disease Day Photo Contest! We were truly moved by the creativity, stories, and passion behind every photo shared. #curegm1 #raredisease #community #advocacy #charity

Catch a quick update on advocacy, research progress, and ways our community advancing research for GM1. SUBSCRIBE: curegm1.app.neoncrm.com/np/clients/curegm1/subscribe.jsp NEWS: curegm1.org/march-2026-cure-gm1-catalyst #curegm1 #raredisease #hope #advocacy #charity

The mission of Cure GM1 Foundation is to fund and accelerate research and drug development to advance possible treatments for GM1 gangliosidosis. curegm1.org/take-action #curegm1 #raredisease #takeaction #charity #donate

Thank you to everyone showed up for Rare Disease Day. Please continue standing with us. Children continue to fight for life every single day, and the need for research and treatment remains critical. LEARN: curegm1.org/about-gm1 #curegm1 #raredisease #advocacy #charity #hope

Today, Rare Disease Day 2026, we honor our GM1 community members around the world who share the lived experience of facing GM1 every single day. We honor the children who are suffering and dying from this cruel disease.

Today is Rare Disease Day! Knowing the facts matters. Awareness leads to understanding. Understanding leads to action. Take a moment today to learn about GM1 and other rare diseases. Start conversations. Share. MORE: curegm1.org/about-gm1 #curegm1 #raredisease #genetics #advocacy #charity

Important Rare Disease Day coverage of GM1 and Kiaan's story! Watch and share. WATCH: youtu.be/U-nnHHrFq-g?... NEWS: tinyurl.com/ytcs8hyw GIVE: tinyurl.com/mryd4hsr P.S. The NIH runs the IV AAV9 trial #curegm1 #raredisease #hope #donate #charity

GM1 is rare, but the need for awareness, research, and support is urgent. Every voice shared, every dollar donated, and every conversation started brings us one step closer to treatment. Join us. LEARN: curegm1.org/about-gm1 GIVE: curegm1.org/donate #curegm1 #raredisease #genetics #done #hope

NEW Rare Disease Day coverage of GM1 and Kiaan's story! Watch below. “Our little boy has a big smile, an even bigger heart, and we’re on a mission to help him and others like him keep shining.” -Kiaan's mom www.nbcsandiego.com/video/news/l... GIVE: www.gofundme.com/f/donate-to-...

Rare Disease Day is tomorrow. Please take a moment to read these stories. Children and families living with rare diseases aren’t defined by diagnoses, they’re people first. MORE: curegm1.org/stories #curegm1 #hope #raredisease #advocacy #community #share

Knowing the facts matters. Awareness leads to understanding. Understanding leads to action. Take a moment today to learn about GM1 and other rare diseases. Start conversations. Share. MORE: curegm1.org/about-gm1 #curegm1 #raredisease #genetics #advocacy #charity

Celebrate hope for her birthday and Rare Disease Day. Treatments can change and save lives. Give today. Share today. Help change the future. WATCH: youtu.be/Thgwr8Grmy0?... READ MORE: curegm1.org/kron4iris GIVE: givebutter.com/SweetIris #curegm1 #raredisease #donate #research #genetics

There’s still time! 🙌 Join us in completing a few quick and easy activities for Rare Disease Day. Every small action makes a big difference. Don’t wait… jump in today! LEARN MORE: curegm1.org/rare-disease-day #curegm1 #hope #rarediseaseday #fightforlife #charity

Knowing the facts matters. Awareness leads to understanding. Understanding leads to action. Take a moment today to learn about GM1 and other rare diseases. Start conversations. Share. MORE: curegm1.org/about-gm1 #curegm1 #raredisease #genetics #advocacy #charity

"Families facing GM1 don’t want sympathy; we need urgency. We need clinical trials. We need investment in gene therapy. We need people to care even when it’s uncomfortable." ARTICLE: tinyurl.com/5f7867h8 LEARN: curegm1.org/about-gm1 #curegm1 #raredisease #advocacy #community #give

Happy heavenly birthday to sweet Aidan! “Don’t give up hope, but cherish each moment.“ -Aidan's grandma HIS STORY: curegm1.org/aidans-story-2 #curegm1 #raredisease #community #sweetangels

Swing by our charity shop and see what gems you can find today. Every purchase makes a difference to a critically important cause. SHOP: curegm1.org/gm1-store #curegm1 #raredisease #hope #charity #give

It’s photo contest time! The winner will be featured on our social media, highlighted in our March newsletter, and receive a Cure GM1 t-shirt. Enter by Feb. 25! ENTER: curegm1.org/rare-disease-day-photo-contest #curegm1 #hope #advocacy #awareness #patients

“Leonor is 17 years old, she's a loving girl and loves hugs. We were diagnosed when she was 10, and it's been a great struggle every day. I sincerely hope for a cure with hope and faith." -Leonor’s Mom MORE: curegm1.org/leonors-story #curegm1 #raredisease #community #patients #advocacy

Adulthood. Our Sweet Iris is 18 years old. Birthdays are often bittersweet for families impacted by GM1. They’re supposed to be a time of celebration, but we live under a cloud of a disease. GIVE: curegm1.org/donate LEARN MORE: curegm1.org/ert-project Please join us again by showing your support.

Kennedy, you bring so much personality, laughter, and love to your family. Keep shining, keep singing, and keep amazing! Happy birthday! #curegm1 #raredisease #community #advocacy #birthdays

“I didn’t realize the strength I possessed until I was told Nate had GM1 and what that would mean for our lives and most importantly his life.“ -Nate's mom HIS STORY: curegm1.org/nates-story #curegm1 #patients #charity #raredisease #give

Behind every rare disease is a family fighting for hope and awareness. Make a plan for Rare Disease Day and also ask your Governor to proclaim GM1 Day (5/23) and help shine a light on the GM1. #curegm1 #raredisease #advocacy #patients #awareness

"GM1 has stolen his mobility, his sight and his ability to eat. Life can be cruel ... We love our boy unconditionally and are by his side daily and will be as long as needed." -Reece's Mom LEARN MORE: curegm1.org/about-gm1 #curegm1 #raredisease #charity #hope #give

Our love is rare and so is GM1 gangliosidosis. This Valentine’s Day, honor someone you love by supporting research and families through Cure GM1. Together, we can turn love into action. Donate today: curegm1.org/donate #curegm1 #hope #give #love #raredisease

“Some lives are measured not in years, but in the love they leave behind.” -Unknown May sweet Liam rest in peace. #curegm1 #raredisease #childloss #grief #restinpeace

GM1 gangliosidosis is a devastating rare disease that needs more awareness and more funding. Reach out to local news, podcasts, and bloggers. One story can spark understanding, urgency, and support for research. Let’s make GM1 impossible to ignore. #curegm1 #hope #advocacy #donate #takeaction

Tiffany is battling with GM1, which is a rare, life-limiting disease that still has no cure. Be part of Cure GM1. Stand with them, spread hope, and support her. Read Tiffany's journey: www.curegm1.org/tiffanys-sto... #curegm1 #rarediseaseawareness #supportfamilies #hope #donation

Varuna Gopalan lives in San Diego with her husband, Manmeet, and their children. Their family’s journey with GM1 began when their son, Kiaan, was diagnosed with GM1 gangliosidosis, leading Varuna to become deeply involved in advocacy and awareness for this rare disease. #curegm1 #community #hope

As we move through Rare Disease Month, we must take time to honor those we have lost to the ultra-rare disease GM1 gangliosidosis. Today, we honor Aidan, who died one year ago today from GM1. #RareDiseaseDay #CureGM1 #Advocacy #Support

ou can make a difference by shopping and supporting rare disease research, advocacy, and drug development. SHOP: curegm1.org/gm1-store #curegm1 #hope #charity #donate #give

The Cure GM1 Census is more than a survey. It’s proof that our community is real, global, and growing. When families affected by GM1 show up, we create visibility that drives research, funding, and urgency. Take part: curegm1.org/census #curegm1 #datamatters #rare #advocacy #community

Happy Belated Birthday, Ezra! Wishing you a magical day full of fun and laughter.🎉 #love #hope #birthdays #advocacy #support

The WORLDSymposium is a conference to connect with researchers companies, and advocates. We presented our poster entitled Global Characterization of GM1 Gangliosidosis: Insights from a Patient-Powered Registry. Subscribe: tinyurl.com/2v3n3ab2 #curegm1 #research #raredisease

Wishing you a very Happy Birthday, Camden 🎂 #birthday #support #love #hope

Together, awareness can make a difference. #RareDiseaseDay #GM1 #DiagnosisMatters #CureGM1Foundation

Early diagnosis is critical to improving outcomes. The diagnostic odyssey is exhausting. Awareness and education to change. Learn more about GM1: curegm1.org/about-gm1 #curegm1 #rarediseaseday #advocacy #genetics #medicine

Happy birthday, Tiffany! 🥂 Wishing you a day filled with love, laughter, and everything that makes you smile. #hope #advocacy #birthday #support

Happy Birthday, Frieda! 🎂 Cheers to many more wins ahead. #birthday #support #hope #spreadlove

We're looking forward to the WORLDSymposium meeting in San Diego this week! Don't miss our poster presentation on Wednesday: Global Characterization of GM1 Gangliosidosis: Insights from a Patient-Powered Registry. #curegm1 #hope #patients #community #raredisease

Today kicks off Rare Disease Month. Rare diseases like GM1 gangliosidosis need awareness, funding, and fierce advocacy. Please show your support for the Cure GM1 Foundation in the fight for treatments and hope. #curegm1 #raredisease #genetics #charity

A very happy birthday to Florence! Read her story here: www.curegm1.org/florences-story/ #curegm1 #hope #birthdays

Babies and children are losing their lives while a promising treatment waits for funding, #curegm1 #give #donate

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

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

Mail [email protected] 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

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

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