MLD Foundation

We congratulate the rare disease advocates and public health officials who worked tirelessly to make today’s progress possible—and we especially recognize and honor the Duchenne and MLD communities and the patient advocacy organizations who never gave up, especially the condition nominators: @ParentProjectMD, @MLDfoundation, and @MDAorg Thank you to Secretary @RobertKennedyJr and @HHSGov for demonstrating a strong commitment to newborn screening and the federal RUSP. To read the full story and learn more visit: bit.ly/3N3Mbld Pictured below: Annie Kennedy, @RogerWicker, Pat Furlong, @Bilirakis

“Thank you, @SecKennedy, for your leadership in adding Duchenne Muscular Dystrophy and Metachromatic Leukodystrophy to the Recommended Uniform Screening Panel. Every child deserves the healthiest possible start. Early detection brings earlier care, better outcomes, and more hope for families nationwide.” — Dr. Stephanie Haridpolos, Chief of Staff and Senior Advisor

@Surgeon_General @SecKennedy @SecKennedy as the MLD community and the rare disease community celebrate Rare Disease Day, we thank you for your commitment to Newborn Screening and working to save the most precious asset we have.

ARM issues statement on Dr. Peter Marks and the FDA’s Office of Therapeutic Products. alliancerm.org/press-release/…

We're thankful for you ... please see why in the text at this shared post. facebook.com/share/v/3UHXyR… #MLD #FMLD #raredisease #thankful #blessed #genetherapy #newbornscreening

Times up to register for the 2023 MLD Family Conference™! TODAY is the last day to join the weekend of FUN July 14 & 15 in Knoxville, TN. mld.foundation/conference Questions? teryn@mldfoundation.org

Advocating (again!) for the MLD community at the Alliance for Regenerative Medicine fly-in on Capital Hill (DC). #CGFlyIn23 #raredisease #FMLD #MLD

𝗙𝗮𝗺𝗶𝗹𝗶𝗲𝘀 𝗮𝗻𝗱 𝗳𝗿𝗶𝗲𝗻𝗱𝘀 𝗶𝗻 𝗜𝗟, there is a hearing scheduled on 𝗦𝗕 𝟲𝟳 in the House Human Services Committee for this Wednesday, April 19th at 8:30 am. Submit witness slips at the following link. my.ilga.gov/WitnessSlip/Cr…

@AFJTim Thanks for the great advocacy lobbying info you shared on the @HaystackProject meeting this afternoon. I just looked up the excise tax ... it appears to be 25%. I'm filling in form 5768, the 501(h) election this afternoon! --Dean @AFJBeBold #raredisease #MLD #FMLD

@PupscanLA Good dog!

End Of The Pursuit K9 Take Down

You're doing a great job Kathleen O'Sullivan Fortin ... and looking so good on camera! #ALDPFDD #RareDisease #ALD @ALDConnect

The MLD community hosts a PFDD meeting Oct 21st ... check in with the #ALDPFDD if you want to see what these meetings are all about. #raredisease #FMLD #MLD

Adult ALD patients and families … #ALDPFDD is going on now aldconnect.org/pfdd-english-l… #RareDisease

The afternoon awaits – please join our friends at @aldconnect & share your voice with the FDA. #ALDPFDD #raredisease aldconnect.org/pfdd-english-l…

Our friends at @aldconnect have kicked off the ALD community's EL-PFDD meeting #ALDPFDD

@aldconnect is hosting their ALD Patient Focused Drug Development meeting today. #ALDPFDD aldconnect.org/pfdd-english-l…

Are you missing your bag at DFW. Arrived gate 4 approx 7:45pm CT. It was under the plane - I told the gate agent and they moved it to the driveway where all are driving by and ignoring it. #fail #AA #AmericanAirlines #lostLuggage

It only takes 15-20 minutes to start participating in the AllStripes research program. Your MLD journey can help with a wide range of research efforts. Learn more here: allstripes.com/mld"

Lexi is an ambassador for AllStripes’ MLD research program. She is a mother and advocate for Axel who is living with MLD. Learn more at allstripes.com/mld.