2021 Year in Review | Cure MLD скачать в хорошем качестве

2021 Year in Review | Cure MLD

Cure MLD had quite a busy year in 2021! Find out more information about our accomplishments in the description below: 1️⃣ Launched MLDCures, our new IRB-approved patient contact registry. Join the registry today at: https://mldcures.iamrare.org 2️⃣ Helped families access MLD gene therapy in the U.S. for the first time under pre-approval access policies! Learn more about the first MLD gene therapy patient in the U.S., Celia Grace, here: https://mhealthfairview.org/blog/celi... 3️⃣ Hosted our virtual Cupcake 5K to support families impacted by MLD. Learn more about the Cupcake Run here: https://www.curemld.com/cupcake-5k 4️⃣ Launched our psychological support program with Family Support Coach, Dr. Al. We offer 2 virtual support sessions with Al at no cost to the families who are newly diagnosed. We also began an adult MLD caregiver support group and a social hour for adults with MLD. Meet Al and learn more here:    • Al Freedman, Family Support Coach | Screen...   5️⃣ Sent out nearly 100 care packages to newly diagnosed families around the globe since starting in 2019. Find more resources on our website: https://www.curemld.com/support-and-r... 6️⃣ Hosted the MLD Standards of Care meeting for which you can watch back all sessions here: https://www.curemld.com/mld-standards... 7️⃣ Hosted an MLD Family Meeting in collaboration with the United Leukodystrophy Foundation. You can view our sessions at these links: 🔹MLD Global Voices:    • ULF 2021: Cure MLD - Global Voices   🔹MLD HOME Study:    • ULF 2021: Cure MLD - HOME Study & Clinical...   🔹The Joy of Poop:    • ULF 2021: Cure MLD - The Joy of Poop   8️⃣ Launched the Leukodystrophy Newborn Screening Action Network to empower newborn screening advocates around the world. Visit https://ldnbs.org to learn more. 9️⃣ Maria Kefalas published her memoir, “Harnessing Grief,” and you can purchase a copy on Amazon or the publisher’s website here: https://www.penguinrandomhouse.com/bo... 🔟 Sponsored another Wellesley fellow at the Children’s Hospital of Philadelphia to learn about clinical research in leukodystrophies and genetic medicine, a program that began in 2014. Learn how it all began here: https://www.wellesley.edu/news/2021/s... The year's not quite over yet! Keep an eye out for: 🔹Cupcake Gala sponsorship opportunities! Learn more: https://www.thecalliopejoyfoundation.... 🔹Cal's 12th birthday on December 23rd! We are looking to raise $12,000 in honor of Cal's 12th birthday by the end of the year. Donate here: https://www.classy.org/give/259911/#!... About Cure MLD Cure MLD is a global network of patient advocates and nonprofits dedicated to helping families impacted by metachromatic leukodystrophy (MLD). We are here to connect families with resources, information, support, and others dealing with MLD. Visit our website to learn about treatment options and clinical trials for gene therapy and enzyme replacement therapy, and to find doctors around the world who are experts in treating MLD. Support for Cure MLD comes from Chloe’s Fight, Love for Loie,Gavin Flying for a Cure, the Calliope Joy Foundation, and other MLD families around the world. FOLLOW CURE MLD: -Website: https://www.curemld.com/​ -Facebook:   / curemld​   -Instagram:   / ​   -Twitter:   / cure_mld   ​ -LinkedIn:   / cure-mld   #MLD #CureMLD #MetachromaticLeukodystrophy #Leukodystrophy #MLDconference #conference #NaturalHistory #Advocacy #NewbornScreening #NBS #NBSAdvocate #LDNBS #CHOP #FamilySupport #Advocate #MLDcommunity