L-CMD Research Foundation

LMNA patient meet up (virtual) hosted by LMNA Cardiac! Register here: https://lnkd.in/gav8rNZR L-CMD Research Foundation

Writing up an L-CMD Research Foundation scientific update email for tomorrow. Message me with your email address to be added to our distribution list (if you're not already on it).

Calling all California residents! Please sign our petition TODAY to protect funding for rare-disease research!! https://lnkd.in/gihiZ8Q7 The California Institute for Regenerative Medicine (CIRM) is one of the few major funders in the U.S. that awards grants to support research into rare-disease treatments and cures. CIRM is currently evaluating its funding priorities ahead of their board meeting on June 27. We urgently need your help to ensure that they continue to fund rare-disease research. This research not only benefits the more than 3 million Californians diagnosed with rare conditions – more than half of them children – it also often yields important advances in the development of treatments for other more common diseases, such as Alzheimer's and Parkinson's. Please join me in urging CIRM to continue its funding for rare-disease research. Without it, millions of patients and families will be left without treatments and hope. Please sign our petition today, and thank you so much for making a difference for kids like Tristan!! California Institute for Regenerative Medicine (CIRM) EveryLife Foundation for Rare Diseases California Action Link for Rare Diseases (CAL RARE) Gavin Newsom Justin West, MD J. Michael Graglia Priyanka Kakkar Yael Weiss Nasha Fitter Craig Martin Aaron J Harding, MSc, CLS, MLS(ASCP)SBB Melissa M. Keenan Ethan Perlstein Christina Waters, PhD MBA Rohan Seth Noah Auerhahn #careaboutrare #cirm4rare #ca4rare #raredisease #precisionmedicine

The English language has no word for a parent who loses a child, perhaps because the pain is so deep, it cannot be fully expressed in words alone. To all the bereaved mothers in our community, our hearts are with you. #curegm1 #childloss #bereaved #raredisease

Exciting things happening over at Everlum! Our team is dedicated to creating personalized therapeutics and giving families impacted by rare disease hope.... https://lnkd.in/gNkjrjs9

Thank you to everyone who joined us Third Hill Brewing Company in Silver Spring, MD on April 6th! Together, we raised over $46,000 for L-CMD Research Foundation to fund new scientific research into LMNA-related congenital muscular dystrophy!

Starting to make my packing list for our trip to Baltimore....Austin's list is the longest with machines, food, medicine, syringes....I won't say air travel isn't do-able when your child has at least three live-giving (heavy) machines to carry aboard, medical liquids and purees, and cannot sit up (thereby making the seating situation extremely tricky)....but it is hard. We haven't been on a plane in a year and we're expecting him to still go into the baby car seat on the plane. Apologies in advance to the person sitting in front of him who is just going to be kicked for hours. I'm exhausted just thinking about it. But I am buoyed by the anticipation of seeing friends and colleagues back East on April 6th as we celebrate together Third Hill Brewing Company in Silver Spring. Will you join us so we can see as many folks as possible after making the trip? Thank you to everyone who has bought a ticket and/or supported and to the wonderful volunteers who are making this come together!! (Paige Bolinger, Lauren Flickinger, Mariel Borrel, Jamie Snider, Angela Viv Papazoglou, Nicole Halton, CMP) https://lnkd.in/giZRzRwv