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AUSTIN playing with balloons for his 2nd birthday in August 2021!
Read more about L-CMD and Austin's story below.
Please help us save our son’s life. Austin is 3 years old and has a fatal, muscle-wasting disease called LMNA-related congenital muscular dystrophy (L-CMD). In order to save Austin and similarly situated children, we have started the L-CMD Research Foundation. The purpose of the foundation is to fund the work of researchers and scientists who will develop treatments and a cure for L-CMD. The most pressing project, which could literally save Austin from childhood death, is the development of a gene therapy. The effectiveness of gene therapy decreases as children grow and as the disease progresses; so time is running out. We are raising $2,000,000 to fund the various stages of this gene therapy project. We are rawly and openly asking for your support of this project, which is our son’s best hope for survival.
L-CMD is severe. Kids statistically live less than 18 years (in one study of kids who had passed away, those who never achieved walking - like Austin - died at a median age of just 8 years old). L-CMD leads to respiratory insufficiency or heart issues. This progressive disease greatly affects Austin’s strength already. He has no head control, a weak torso, arms and legs, so he cannot stand, walk or even sit up or eat by mouth. We have just ordered him his first power wheelchair.
Despite his limitations, however, Austin is quite happy. He loves music, "dancing" and playing with toy cars and trains. He can't lift heavy toys or big books, but he likes to stack light blocks and play with any toy that makes a noise with buttons. So in these ways, he is cognitively quite typical for a child his age.
Given that Austin is on the severe end of the spectrum, we cannot wait for the science to reach us; we must go seeking the innovative, most promising scientific technologies. Since his diagnosis in February 2020, we've been knocking on doors (virtually), talking with scientists and doctors, biotech firms and academic labs, and we've concluded that gene therapy will give Austin and the other kids with L-CMD the best chance to survive and thrive.
We know that the sooner kids with degenerative diseases receive gene therapy, the better the outcomes. The implications of this science could change the world, and we stand poised at the tipping point of making these treatments and cures a reality for many.
We KNOW that we cannot do this alone. We need your help.
HOW YOU CAN HELP TODAY:
1) Donate what you can
2) Share this fundraiser with your networks via email and social media
3) Share our social media posts
4) Reach out to us at [email protected] to discuss larger donations, donating via check, stock or crypto, organizing a fundraiser, company matching, corporate sponsorship, media/PR, grants
It ALL helps, and it’s ALL important.
WHERE IS YOUR MONEY GOING?
All money raised will go directly to scientific research. We do not take out any expenses for administrative, salaries, etc.
WHY SO MUCH MONEY?
Research and development of cutting edge technologies unfortunately often falls to patient groups to fund them until such a stage that a large pharmaceutical company may see the monetary value and take it the rest of the way to full clinical trial and distribution.
URGENCY IS THE NAME OF THE GAME
Being a progressive disease, L-CMD will strip away Austin’s physical abilities to the point that he will no longer be able to move and his heart will fail to function properly without assistance. The sooner we can intervene, the better chance he will have to regain lost muscle function and stave off heart issues.
THANK YOU for considering being a huge part of Austin's success story. Let's change the world together because of the generosity of you, who see the light and joy in Austin. We are so hopeful.
We're ready. Let's GO!
THANK YOU FROM THE BOTTOM OF OUR HEARTS, Mark, Hannah, Ean + AUSTIN
L-CMD Research Foundation
EIN: 85-2640499 (501c3)
*All funds raised will be used for scientific research and development*