Cure SCG

02/28/2026

On behalf of LGMD CAP
Help shape better cardiac care for people living with LGMD

We are launching an international patient survey to capture the lived experiences of up to 140 individuals across multiple LGMD subtypes. The goal is to better understand real-world experiences related to access to cardiac care, treatment satisfaction, and daily quality of life, and to explore how these experiences differ across countries.

By listening directly to patients and families, this survey aims to identify meaningful patterns and unmet needs that are often missed in clinical settings alone.

The findings will be included in a scientific publication and presented at the ENMC workshop on cardiac care in November 2026. Bringing the patient voice directly into this expert forum will help strengthen clinical communication, inform future patient engagement strategies, and support more patient-centered approaches to care.

The results will also contribute to the development of a dedicated masterclass for cardiologists treating LGMD patients, created in partnership with Treat NMD, to support improved understanding and management of cardiac involvement in LGMD.

Your data is safe and protected.
All responses will be fully anonymized prior to analysis and securely stored by Treat NMD.

If you are living with LGMD or caring for someone who is, we encourage you to share your experience and help shape the future of cardiac care for the LGMD community.

👉 To take the survey; send an email to web@lgmdcab.org

💚

02/28/2026

Rare Disease Day 💚

Our journey with rare disease began only three years ago.
Three years of learning a new language we never expected to learn; medical terms, clinical trials, uncertainty, and hope.

In this short time, we advocated. We traveled across countries. We sat in medical conferences that, at first, felt overwhelming and impossible to understand. Slowly, we learned. We asked questions. We kept showing up.

We partnered with researchers and health institutions, working to help move science forward. But the strongest connection we found was not in conference rooms; it was with other parents and children.

We understand each other without explanation.
We feel what others feel.
Our children connect instantly, as if they already know they are not alone.
We hold each other up when the weight becomes too heavy.

Some families have been fighting for decades. Their strength lights the path for families like ours. Their advocacy made space for progress, for research, for hope.

To every parent raising a child with a rare disease: you are the momentum behind change. You are the voice science listens to. You are the reason progress continues.

Today we raise awareness for rare diseases and for Limb-Girdle Muscular Dystrophy (LGMD).
Awareness leads to research.
Research leads to treatments.
And treatments lead to hope.

No family should walk this path alone.
Together, we move forward.
Together, we keep going.
Time is muscle.

02/20/2026

Ramadan is a season of mercy, generosity, and hope 🌙💚

For families living with Limb-Girdle Muscular Dystrophy, hope means research moving forward and treatments that cannot wait.

At CureSCG, every donation helps accelerate gene therapy research and brings us closer to real options for children and families affected by sarcoglycanopathy.

This Ramadan, your support can make a meaningful difference and help ensure patients are not left waiting.

Donate, share, and be part of the progress.
🔗 Donation link in bio

02/13/2026

On behalf of LGMD CAP
Help shape better cardiac care for people living with LGMD

We are launching an international patient survey to capture the lived experiences of up to 140 individuals across multiple LGMD subtypes. The goal is to better understand real-world experiences related to access to cardiac care, treatment satisfaction, and daily quality of life, and to explore how these experiences differ across countries.

By listening directly to patients and families, this survey aims to identify meaningful patterns and unmet needs that are often missed in clinical settings alone.

The findings will be included in a scientific publication and presented at the ENMC workshop on cardiac care in November 2026. Bringing the patient voice directly into this expert forum will help strengthen clinical communication, inform future patient engagement strategies, and support more patient-centered approaches to care.

The results will also contribute to the development of a dedicated masterclass for cardiologists treating LGMD patients, created in partnership with Treat NMD, to support improved understanding and management of cardiac involvement in LGMD.

Your data is safe and protected.
All responses will be fully anonymized prior to analysis and securely stored by Treat NMD.

If you are living with LGMD or caring for someone who is, we encourage you to share your experience and help shape the future of cardiac care for the LGMD community.

👉 Take the survey https://tally.so/r/LZ7EbO

💚

01/29/2026

It was wonderful to see Joe and Peter from the and spend time together. We are deeply thankful for their continued hard work and dedication in advancing the first ever LGMD2C clinical trial, which has brought hope to so many families in our community.

What made this moment especially meaningful was seeing children with the same condition connect with one another. These moments of understanding, belonging, and shared experience matter just as much as the science. They remind us why community is so important for our kids and our families.

As a nonprofit supporting research and patient advocacy, we are grateful to stand alongside those working tirelessly to move LGMD research forward and to build a stronger, more connected community for our children.

Thank you, Dion Foundation, for all that you do. 💚

01/16/2026

As we move into 2026, we’re proud to welcome Sheena Urdaz as a Board Member, Patient Advocate, and Fundraising Lead at CureSCG.

Sheena’s connection to our mission is deeply personal. As both a healthcare professional and a parent of children living with LGMD, she brings lived experience, compassion, and a strong voice for families navigating this disease. Her dedication will help strengthen patient advocacy efforts and support our work to accelerate research toward a cure for LGMD sarcoglycanopathies.

We are truly grateful to have passionate, patient-driven leaders like Sheena joining our team. With a growing community and shared purpose, we will continue pushing forward for all families affected by LGMD. 💚

Learn more about our full team:
https://curescg.org/our-team

01/01/2026

Hello 2026 ✨💚
Stepping into this new year with hope, faith, and gratitude for everyone who has supported our journey through CureSCG. 2025 taught us patience, strength, and the power of community, and now we look ahead with open hearts.

May this year bring peace, healing, and breakthroughs for all the families we fight for. Trusting God’s plan, and believing that 2026 will carry us closer to the future we are working so hard to build. 🤍✨

Here’s to new beginnings, new strength, and a brighter year for all of us.

12/25/2025

This holiday season, give a gift that lasts beyond Christmas and into the New Year 🤍

Your support helps drive research and brings us closer to real hope for those living with LGMD.

Thank you for being part of our journey, here’s to a year filled with progress, strength, and possibility. 🎄✨

12/18/2025

Sara draws with a strength you can feel, every line a reminder that creativity moves where muscles sometimes cannot.

Let us tell you why this matters right now.

Because CureSCG is actively raising funds and donations to advance gene therapy research for LGMD 2C and 2D. From community fundraising to direct donations, and through art like Sara’s. These efforts help move research forward toward real treatments and, ultimately, a cure.

Every purchase, every donation, and every shared effort helps power this work. It means research can continue, trials can progress, and families can hold on to real hope for the future.

🖼️ Learn more or donate: www.CureSCG.org
🎨 Shop Sara’s art: https://curescg.org/shop

11/27/2025

With gratitude to the LGMD community today and always. 🧡🍁

11/03/2025

Use your Donor-Advised Fund to support kids affected by LGMD 💚

Give at: https://www.curescg.org/donate

10/28/2025