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 past two decades we’ve made it our practice to not directly ask you to be our primary source of financial support.
But with that said, we are so thankful for the many families over the years who have organized events and fundraisers … and we are so humbled to be remembered when loved ones get their angel wings.
We are asking you to please share with your friends, extended family, …
Today we’re asking you to share with your extended family, friends, neighbors, co-workers, and social networks how important and impactful MLD Foundation has been to your family. We need your help to ask for their support!
How we use donations …
We are frugal with all donations … they go directly to expenses surrounding our core We C.A.R.E.™ mission …
We C.A.R.E.™ … Compassion for families, increasing Awareness, influencing & funding Research, and promoting Education for metachromatic leukodystrophy, a very rare terminal genetic neuro-metabolic disease where over half the cases affect infants.
Since our founding, we have not had any paid staff, all of our work has been a labor of love … no donations have gone to salaries.
2021 will be busy and productive
As we highlighted in last week’s Thanksgiving blog, 2020 has been a very productive year, and 2021 is looking to be the same.
We have a major multi-year project underway making newborn screening a reality for all families worldwide so children have the broadest and optimal choice of therapies while their loved ones are pre-symptomatic and therapies are most effective.
But that’s not all – we are working to assure access and reimbursement for the gene therapy emerging in the EU, we’re supporting the submission and review of gene therapy by the FDA in the USA, increasing physician and family awareness, improving clinician education, developing an MLD Standard of Care, and supporting a number of new therapies in development and under clinical trial at nearly a half dozen biopharma companies, and so much more.
Please share … a few moments of your time will allow us to to keep serving you!