L-CMD Research Foundation

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

04/19/2026

This spring has been incredibly busy with LMNA research, as well as personally. Austin had the opportunity to play baseball on a team for the first time with which he absolutely loved and now claims baseball as his sport ⚾️

I am deep into updating the website and writing a newsletter for the week. 📝

We are also up to our elbows in spreadsheets to finish up our annual financial audit.

The one thing we haven’t done well is plan any sort of fundraiser for the year. We are working with our board and advisors to determine the realistic financial need should some of our projects move to next steps.

We appreciate y’all being here - 2 asks:
1. If you have some motivation, enthusiasm and an idea re fundraising or friend-raising, reach out! No idea is too small - we’ve raised thousands on bake sales and shopping events and donation workout classes 🎉🙋‍♀️💃

2. If you don’t get our newsletter but would like to, message me your email address. If you want to check, the last email I sent would have been in December from [email protected] 👩‍💻

03/20/2026

Today was my regular cardiac appointment to check my heart rhythm, defibrillator readings and battery life.

I’m not as anxious about these appointments anymore. As scary as it all is, I now have a defibrillator inside me that’s there to keep me alive — and that brings a huge sense of reassurance.

I also have a tiny LINQ monitor, no bigger than a USB stick, fitted just under the skin on my chest. This little device continuously monitors my heart and flags any irregularities… and it’s this very device that saved my life.

If you know anyone living with LMNA-CMD, I cannot stress this enough — please push for at least a LINQ monitor to be fitted from at least 7 yrs old, if not earlier, It really is just a matter of time, and without that early detection, it could be too late 🥲

L-CMD Research Foundation Cure CMD Muscular Dystrophy UK

03/02/2026

Giving is more powerful when it’s shared. We are forever grateful to our amazing community of supporters and donors. Without you we wouldn’t be able to move research forward for L-CMD.

I’ll be speaking with of at the Nonprofit Fundraising Summit: The Great Connection about how
social donation matching can invite more people into generosity—without making it complicated.

If you’re curious about new ways to grow participation, this session is for you.
🔗 Free registration:
https://www.causevox.com/register-now-nonprofit-fundraising-summit-the-great-connection/

Hosted by

12/11/2025

Add yours 👇

12/09/2025

Happy holidays from our family to yours 🎅🌲
I hope your season is filled with togetherness and peace 🙏
Here’s to a new year, new treatments, renewed energy and miracles coming true ✨

11/24/2025

Hope you roll into a wonderful Thanksgiving week and mark your calendar for Giving Tuesday! (Which I think can probably start now 😘)

GiveButter.com/2-before-2

11/19/2025

code is live all year FYI. But if you’re working on holiday cards today, don’t forget to use FUNDRAISELCMD for 20% off your order PLUS a % giveback to L-CMD research 🔬 😘

11/19/2025

11/18/2025

Happening now 🙏

Los esperamos!

11/18/2025

TODAY is LMNA Awareness Day! Wear orange in support of kids like Austin and Carmela and in memory of dear ELI Foundation Puerto Rico whose birthday would have been today 🙏

Today is LMNA Awareness Day. 🧡

Carmela has LMNA-Congenital Muscular Dystrophy (LMNA-CMD) — an ultra-rare condition affecting only a few hundred people worldwide.

Today, we want to shine a light on how this condition affects Carmela’s body and why raising awareness is so important. LMNA-CMD is a cruel, progressive muscle-wasting condition. Over time, it steals away movement, strength, independence, and even control over the simplest daily tasks. It also brings serious complications such as heart disease, respiratory weakness, spine deformities, joint contractures, and metabolic issues.

Awareness isn’t just a word for us — it’s hope.
Hope for funding, for medical research, and for one day finding a treatment or cure so children like Carmela can live fuller, freer lives.

Thank you for helping us spread the word today. Your support truly matters.

https://www.justgiving.com/campaigns/charity/muscular-dystrophy/carmela



L-CMD Research Foundation Cure CMD