Walk for Olivia ... Raising funds for We C.A.R.E. projects (May 2008)
Recent Events:
Jump, Jiggle & Jive for Jasper 2/23/08 - Chicago, IL - raised over $8,000 for MLD research, awareness, and newborn screening. Many thanks for your excellent support!
Redneck Prom 11/10/07 - Funding for Maddie's House, Stanton, Michigan
Bull Roast 10/28/07 - Glen Burnie, NJ - raised over $5,000 for our We C.A.R.E. projects.
Olivia's Walk 5/20/07 - Phoenix, AZ - raised over $3,000 for our We C.A.R.E. projects.
L.E.D. (Leukodystrophies and Eating Disorders) Walk 9/22/07 - Amarillo, TX
MLD Foundation Activities
2008
January ... started MLD Foundations's Best-in-Class International Rare-Disease Registry Survey Project.
February ... visited director of NINDS/NIH in Baltimore, Md. Also met with researchers, foundations, industry, and registry developers/hosts in Chapel Hill, Raleigh, Buffalo, Baltimore, Boston, Cambridge (UK & US), Paris, Bonn, Tubingen, Hamburg, Milan, Manchester (UK) and a follow-up meeting with Zymenex in Copenhagen to discuss their US Natural History Study and forthcoming US Clinical Trial. Attended the annual Lysosomal Disease Network's WORLD meeting to meet with more researchers and industry from throughout the world with a specific meeting with Shire to talk about their Natural History and Clinical Trial needs. Attended a US Hunter Outcome survey (more researchers, registry and ERT work)
March ... A week home!
Coming in July ... ULF Conference, Genetic Alliance Conference, regional MLD gatherings in the midwest and west.
2007
February ... visits to the FDA and NIH in Baltimore, Md.
May ... follow-up visits to the FDA and NIH
July ... attended the ULF conference, family gathering in Toronto, visited two research labs in Toronto, follow-up visits to the FDA & NIH, participated on a day of lobbying on Capital Hill for GINA, attended the Genetic Alliance annual meeting, visited the Maryland Brain and Tissue Bank.
September ... and visit to Zymenex in Denmark and attended the MLD Registry Consortium meeting in Hamburg
October ... hosted the MLD Registry Consortium and MLD Family Conference in Boston, MA. and attended the ASHG annual meeting as an invited guest advocate.
November ... Attended Fabray and Hunter Outcome survey meetings to observe ERT research and registry operation.
2006
July ... MLD Family Conference held in North Carolina and attended the ULF annual meeting of scientists
December ... represented MLD families at the WORLD Lysosomal Disease Symposium.
2005 ... numerous events across the country including participating in the MLD initiative kickoff in Washington DC.
Event Planning
The MLD Foundation encourages local events to increase the awareness of MLD. These events should be organized and run by local volunteers that come alongside the MLD affected family. The MLD affected family is the reason that the community will show interest in MLD event. The community will turn out to support the family and to further MLD specific efforts such as those underway at the MLD Foundation.
The MLD Foundation will provide a framework and assistance to help the local team organize the event. We can offer assistance, including online registration and collection of donations & fees, so that the local team can focus on the logistics of the event and its publicity. Donations made to the MLD Foundation are tax deductible and with prior agreement, some or all event expenses can be paid out of those donations.