My name is Hannah Lowe, I am the President and Co-Founder of the L-CMD Research Foundation, and I am also my son Austin’s biggest fan. This September, we will be hosting a Silent Auction online and in-person in our hometown of Houston, TX.

We are raising money to develop treatments for 4 year old Austin Corman and other children suffering from LMNA-related congenital muscular dystrophy (L-CMD). L-CMD is a progressive muscle-wasting disease; untreated, children will lose the ability to sit, stand, walk and even hold up their heads. Their lungs and heart muscles will deteriorate and most children pass away from cardiac arrest or respiratory issues. Time is not on our side.

If you have something to donate to the silent auction, THANK YOU and please use this link: https://forms.gle/JdtUhgZn3tFgd5Dy6.

Below I have provided some more of our story, our purpose and what we have accomplished. We hope you can support us and provide a brighter future for children fighting L-CMD.

Please feel free to reach out to me if you have any questions: hannah@lcmdresearch.org / www.lcmdresearch.org

OUR STORY: In February of 2020, when Austin was 6 months old, he was diagnosed with an ultra-rare degenerative neuromuscular disease called LMNA-related congenital muscular dystrophy (L-CMD). Untreated, Austin’s muscles will waste away even more than they have (he already cannot hold up his head, sit up, stand, or eat by mouth), he will develop heart arrhythmias and need respiratory support; we know that he likely will not see adulthood as the median life expectancy for kids like him who have never walked is 8 years old. Mentally, Austin is typical and in fact quite smart with an excellent vocabulary for a 3 year old - likely because he must communicate all of his needs as he cannot move around by himself to play or reach for toys. L-CMD is similar to Duchenne Muscular Dystrophy, but with a more rapid decline. The doctors told his parents there was no cure or treatment for this ultra-rare disease.

As parents, Hannah and Mark were simply unable to stand by and watch Austin and other children with L-CMD waste away. They quickly learned that we are at a transformative moment where scientific advances are being turned into therapies that are changing the course of rare genetic diseases. Unfortunately rare disease funding is completely parent driven and parent funded. In a race against time, Hannah and her husband quickly founded the L-CMD Research Foundation to initiate and accelerate translational research.

OUR PURPOSE: The Foundation, a non-profit 501(c)3 public charity, was founded to fund, support and advance research including the development and production of therapeutic treatments for L-CMD. To accomplish their purpose they have pioneered a collaborative scientific approach through gene therapy, repurposing FDA approved drugs and other gene modifying therapies. They see a world without L-CMD. The innovations they develop along the way will be used to treat and cure many other related diseases and save thousands of children.

WHAT WE DO: We have worked non-stop to establish a collaborative, international, expert-driven research network. In less than three years the Foundation has set up a volunteer advisory board, initiated 8 research projects, held countless fundraisers and raised over $1,700,000. They are collaborating on projects with UMass Chan Medical, Instituto de Salud Carlos III (Madrid, Spain), University of Maryland, Sandford Burnham Prebys, Everlum Bio and other small biotechs. Since the founders cover all operational costs and they do not take salaries, 100% of every donation goes directly to fund research and drug development.

ADDITIONAL INFO: For more information about the foundation please visit www.lcmdresearch.org or watch their Good Morning America segment, ABC News segment or read about them in the Houston Chronicle.

FOLLOW: @lcmd.foundation on Facebook and Instagram.

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