#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 second busiest travel and meeting time … so much so that we have yet to decompress and summarize all that we have done. Your generous gifts are what enables us to work on your behalf!
We’ve Been Busy!
We’ll send out some summary postings over the next few weeks, but in the meantime, here are a few highlights of our last 60 days …
- Teryn was an invited panelist to a Social Security Administration event on SSI Compassionate Allowances where she presented the case to add juvenile and adult MLD to the CAL … and also insight on how SSA can be more effective n supporting families.
- Attended the annual Rare Diseases and Orphan Products Breakthrough Summit sponsored by NORD.
- Met with industry, BIO, and numerous advocacy organizations to drive collaboration on rare disease policy – especially for ACA and Orphan Drug Tax policy issues.
- Met with another Pharma company who detailed to us, for the first time, the details of their internal development work on MLD. That makes 3 companies who have active MLD projects plus at least two more we cannot name just yet.
- Hosted a MLD Newborn Screening Summit in Philadelphia with some 40 experts attending to focus our collaborative efforts to get MLD newborn screening (NBS) going in the US and abroad. The lab test results for the proposed screen are looking very good but there is much to do to get this ready for population-wide public health implementation.
- Met with a well respected and very knowledgable doctor/researcher who is anxious to pursue more MLD work … and is an active advisor/consultant for pharma and biotech investors.
- Working to bring two more strains of MLD mice to the US from Germany. MLD Foundation brought the first strain to the US in 2011.
- Continued our Compassion support for families … on the phone, in person in Philadelphia and Boston, and around the globe via email and social media. We’ve recently helped families get confirming diagnostics, make therapy decisions, connect with clinical resources, obtain wheelchair vans and other equipment, and have been a source of direct financial support when unexpected expenses have arisen.
- We even provided video and live streaming support for GLIA, the Global Leukodystrophy Initiative so leukodystrophy researchers can better collaborate.
Please remember to give on #GivingTuesday to support MLD Foundation! There are no salaries paid here – all donations go directly to Compassion support for families and to advance MLD Research and Awareness.