L-CMD Research Foundation

08/23/2026

How is this cool kid turning 7 next week?!?
Where does time go?!

08/20/2026

Imagine sitting down with a team of the world's leading neuromuscular experts. What would you ask them?

Whether you’re living with a neuromuscular disorder, supporting someone you love, or working in the field, your questions will help shape a trusted resource built around the information that matters most.

Ask us anything! From treatments and clinical trials to genetics, exercise, accessibility, daily living, and more.

There are no "wrong" questions. If you've wondered about it, chances are someone else has too. Submit your questions today: https://form.jotform.com/MDCanada/QuestionsAboutNMDs

Help us build a trusted neuromuscular knowledge resource, one question at a time.

08/20/2026

Austin loves his horse therapy Special C.H.E.E.R.S. 🐴
He’s getting back into it after being away this summer and he’s gotten so much taller. He uses a TheraSuit and the owner holds his head up as they walk through the woods.

I love that he gets an opportunity to connect with animals and nature as well as work on his posture and communication skills.

One thing is that Houston is super hot and humid and these kids can’t really regulate their body temps too well so he sweats up a storm. But he’s ok. It doesn’t seem to bother him 🙏

08/15/2026

El pasado miércoles 12 de agosto, estuvimos reunidos con asesores en asuntos de política pública en Fortaleza; para continuar los esfuerzos que la Gobernadora comenzó en el 2020, para atender las enfermedades raras en Puerto Rico.

Es importante para nuestra comunidad, que la Gobernadora y su oficina continué su participación activa y constante en este diálogo.

08/14/2026

Carmela fights to stay mobile using her determination, zest for lif...

08/04/2026

Mi hijo Eli vivió con una enfermedad tan rara que en Puerto Rico no hay un solo protocolo para atenderla. Nadie tenía el mapa. Así nació ELI Foundation Puerto Rico: para que ninguna otra familia tenga que caminar a oscuras lo que nosotros caminamos.

Desde su incorporación en 2016, EFPR ha logrado posicionar las enfermedades raras en la agenda legislativa de Puerto Rico y alcanzado el reconocimiento internacional. Sin embargo, la fundación ha operado principalmente bajo liderazgo voluntario. Para escalar, atender más familias, financiar investigación, expandir el programa SHINE, fortalecer la abogacía legislativa, necesita infraestructura operacional formal.

No proyectamos metas imposibles, pedimos exactamente lo que necesitamos para una operación inicial mínima viable y profesional. Existen múltiples formas de apoyar, desde Recluta ($10-$150/año) hasta Héroes ($3,000+).

“Cada vida importa. Cada familia merece comunidad. Cada héroe necesita aliados. Si esta misión resuena con tu historia, valores o compromiso con la justicia social, estaremos honrados de contar con tu acompañamiento.

Medios de donación:
1. Transferencia ACH o Cheque:
Email: [email protected]

3. ATHmóvil - Ingresa a la aplicación Athmóvil → Selecciona el botón "Donar" → busca ELIFoundationPR → ingresa la cantidad a donar

4. Zeffy: https://www.zeffy.com/en-US/donation-form/una-decada-de-impacto-fortalece-a-eli-foundation-pr-y-el-programa-shine

5. PayPal: https://www.paypal.com/donate/buttons/manage/https%3A%2F%2Fwww.paypal.com%2Fdonate%2F%3Fhosted_button_id%3DN9C8VMBUXPHVS

6. Stripe: https://donate.stripe.com/5kQ28rd8e3IJdfE3eyeIw00

HAY FUERZA EN NO RENDIRSE. TU APOYO LA SOSTIENE

07/30/2026

07/30/2026

Unexplained symptoms and don’t know where to begin? Genetic testing could hold the answers.

Genetic Testing Action Day is an annual day of awareness observed on July 25th, led by Start Genetic® to help families access genetic testing and unlock the answers they deserve.

Learn more at StartGenetic.org

07/01/2026

04/27/2026

Thrilled to announce our partnership with to use their delivery methods targeting muscle tissue and apply them for L-CMD 🎉

Link in bio to read the full press release