Awareness Faces of MLD

The Premier Family Resource for Metachromatic Leukodystrophy Information & Support





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Supporting Compassion for families, Awareness, Research, and Education.
 

Events

Upcoming Events

See home page for upcoming events. Please let us know what you have planned.

Past Events:

2014
Anna Lovisa Benefit Feb 1st, UK
Coripalooza Sept. 14th 1-6pm, Houston, Texas


Believing for Bryleigh
Sept 21st 1-7pm, New Braunfels, Texas


Walgreen's July 18th 2-8pm, Eldersburg, Maryland
Henry's Team Green April 15th, North Carolina, USA

2013
Hannah Burt Benefit Nov 17th, Elmira, NY
Rusty Ball Nov 9th, Cincinnati, OH
Anabelle's Angel Glow Oct 18th, Bend, OR
Ashley's 5K Walk June 22nd, Cincinnatti, OH
Honoring Olivia May 17th, Scottsdale, AZ
Dylan's Dinosaur Stomp May 11th, Hopatcong, New Jersey

2012
Olivia's Night May 11, Phoenix
Ashley's 5K Walk June 9th, Cincinnatti
Chloe's Fight October 20, Minneapolis
5th Bull Roast for Mac October 21, Baltimore
Rusty Ball November 10th, Cincinnati
Wonderland of Wishes Dec 2nd, Philadelphia

2011
Rusty Ball Oct 22, Cincinnati
Chloe's Fight Oct 8, Minneapolis
Ashley's 5K Walk June 25th, Cincinnati
Olivia's Walk May 14th, Phoenix

2010
Miles for Mac Oct 16, Baltimore
4th Bull Roast for Mac Oct 3rd, Baltimore
Ashley's 5K Walk June 19th, Cincinnatti
Olivia's Walk & 7th birthday May 15 Phoenix

2009
Cars & Motos Sep 27, Canfield, OH
Tour of Utah 325 Aug 18, UT
Seatle to Portland 200 July 11
iRace 5k for MLD June 6, Bountiful, UT
2nd Annual Golf for MLD Research June 28, Jacksonville, IL
2nd Annual Devon Ray Walk for MLD- cancelled, Eugene, OR

2008
Olivia's Walk May 16, Phoenix, AZ
Ride for Athena's Hope May 16, Carver, MA
Walk & Lunch Auction May 2, Avon BrdWlk, NJ
Mac's Team Bull Roast Oct'08 Glen Burnie, MD
Midsummer Night's Dream Aug'08 Portland OR
Devon Ray Walk for MLD Aug'08 Eugene, OR
Appalachian Trail for MLD Spring '08
Golf for MLD Research Jun'08, Jacksonville, IL
Miles for Mia Jun'08 St. Paul, MN

2007
Olivia's Walk & 6th birthday – May'08 Phoenix
Shaken & Stirred Apr'08 NY
Jump, Jiggle & Jive Feb'08 Chicago, IL
Redneck Prom Nov'07 MN ...Funding 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.

2007
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

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.

 

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