Giving Tuesday is not just about today … MLD Foundation is small but mighty – powerful, connected, influential, and active! As you consider your Giving Tuesday gifts today, please think about us and know the importance of every gift, no matter how large or small. As we look into the near future, this is what […]
We’re Thinking of all of you It’s just a few minutes into Christmas Day in Portland, Oregon USA as I write this. Mannheim Steamroller is playing in the background but all I keep hearing in my head is Let It Be Christmas by Alan Jackson. That album and the featured song were recorded in 2002,
Almost two years of COVID, a month of Black Friday, Halloween, Cyber Monday is coming, and we’re already seeing Christmas & Hanukkah. My head is spinning and my internal clock is all messed up! Hidden and almost lost in the midst of all of the hubbub is Thanksgiving. For us, it’s a time to reflect,
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
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
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
A MLD mom recently asked about donating her son’s brain and other tissue to research after he passed. There is no more personal or profound donation that can be made to advance MLD research. This post is a lightly edited copy of my response to this special MLD mom … It’s always difficult to talk about tissue
The first rule of blogging is to post good content on a regular basis. The second is to keep your posts short, to the point and to not mix multiple topics into one post. Oh boy, am I in trouble … My 6th trip to DC this year ended reflecting at 35,000′ with a Crater Lake Hazelnut Espresso Vodka courtesy of
For those of you who know me, I have been a teaching computer skills to middle school kids for 17 years!. While I love school now as a teacher, I did not enjoy all aspects of school as a student. My favorite classes were Science and Gym! Social Studies, not so much! Shhhhh….. I really
Rare Disease Week in DC … a parent’s perspective Read More »
Today is Rare Disease Day. It’s an appropriate day to announce we have come one step closer to a MLD Newborn Screen! The pilot study to test the newly developed MLD Newborn assay/technique on current newborn babies born in Washington state will be starting within the next three months once testing lab equipment is in place.
MLD Newborn Screening Pilot Study – Announcement Read More »
