Did you know that today, Tuesday, December 1st, is Giving Tuesday? After a month of “Black Friday” and yesterday’s “Cyber Monday” frenzy, it’s a day to focus on our loved ones! We aren’t asking for your donations … MLD Foundation knows that MLD families have their hands full with their loved ones so for the […]
Giving Tuesday – It’s Our Day Read More »
We heard earlier this week that nearly 4 in 5 people are already looking forward to putting 2020 behind us. The pandemic (family safety, work, school, loss of loved ones, individual and community response, social isolation, etc.), US elections, income, health, … it is affected every one of us, and it’s overwhelming. But we are
We’re thankful – even in 2020! Read More »
Gene therapy for early-onset MLD patients passed a huge milestone yesterday when the European Medicines Agency (EMA) Committee for Medicinal Products for Human Use (CHMP) adopted a positive opinion recommending full, or standard, marketing authorization for Libmeldy, by the European Commission (EC), which has the authority to grant marketing authorization for Libmeldy* in the European
Gene Therapy Recommended for Full EU EC Marketing Authorization Review Read More »
2020 will bring new clinical and therapeutic care to the MLD community. When we started serving MLD Families in 1999 – two decades ago – we had no idea how challenging and time-consuming it would be to improve clinical care and disease altering therapies. Along with your support, we’ve done a lot of heavy and
We have 20/20 Vision for MLD Read More »
Are you bored waiting for the SuperBowl pre-game? Or twiddling your thumbs while waiting for the next commercial to air? If so, please take a few minutes and start to enter your data into the new MLD Patient-Powered Registry. We want to understand MLD better, accurately characterize the MLD patient, family, and caregiver journey, justify
Super Bowl Alternative – MLD Registry Read More »
2019 is going to be a very interesting and productive year for MLD therapy development. The trials for both gene therapy and enzyme replacement therapy will be expanded and for the first time are headed towards sites in the United States. A third biotech has publically announced MLD is an active development candidate. We are
5 Biotechs Actively Developing MLD Therapies Read More »
It’s Christmas all over the world … and is usually my tradition, I share some personal thoughts with all of you, my MLD Family. As many of you know, we lost our Darcee to MLD in 1995 and while Lindy is still with us, she is losing the MLD battle bit by bit. Tonight Teryn,
Christmas Message – to the MLD Family Read More »
#GivingTuesday is Here! Here in the US we celebrated Thanksgiving this past weekend. It’s a time of family, thanks, and giving. Most of us “gave” at the mall on Black Friday or online on Cyber Monday … but now it’s #GivingTuesday, an annual day where the world comes together to give. November is MLD Foundation’s
Your Giving Keeps Us Going – and directly helps families! #GivingTuesday Read More »
#GivingTuesday is Here! Here in the US we celebrated Thanksgiving this past weekend. It’s a time of family, thanks, and giving. Most of us “gave” at the mall on Black Friday or online on Cyber Monday … but now it’s #GivingTuesday, an annual day where the world comes together to give. November is MLD Foundation’s
Your Giving Keeps Us Going and directly helps families! #GivingTuesday Read More »
We are thankful … for you, your support, and all of the MLD progress this year! Teryn and I are so thankful for the wonderful people we meet as we both live with MLD (Lindy turned 38 this year!) and support families with MLD. We’ve met dozens of new families this year, many in person, as
Always Thankful !!! Read More »
