Get Involved
September 20th is LBSL Awareness Day!
Leukoencephalopathy with Brainstem and Spinal Cord Involvement and Lactate Elevation (LBSL) is an ultra-rare neurogenetic disease which is both a mitochondrial disorder and a leukodystrophy.
September is widely recognized as Leukodystrophy Awareness Month. The third week of September is also recognized as World Mitochondrial Disorders Awareness Week. As LBSL falls at the intersection of these two categories of disease, it is fitting to honor LBSL Awareness Day on September 20. For more information: https://rarediseases.org/event/lbsl-awareness-day
Fairlington 5K
It is with great sadness that we have to announce the cancelation of the Fairlington 5K indefinitely. We want to thank everyone who supported this effort over the last seven years. You helped raise $130K for a cure. For more information, please click HERE.
Kendra Scott Jewelry Event
When: Summer 2023
Where: Online
Description: Shop for a cause! The Kendra store of Fairfax will donate 20 percent of all online sales in 48 hours to the cure effort. For more information, CLICK HERE
#GivingTuesday
When: November 28, 2023
Where: Facebook
Description: On this day only donations to Cure LBSL are matched. Last year we raised an incredible $170,000 for the cure effort. To participant in #GivingTuesday, CLICK HERE
Create a Facebook Fundraiser
On your computer, log in to your Facebook account
On the left, click on Fundraisers (heart coin) (see photo 1 below)
On the left, click Raise Money, and select Nonprofit (see photo 2 below)
Type into the search bar “Cure LBSL” (see photo 3 below)
On the left, enter the goal amount you want to raise, the currency, and the end date (see photo 4 below)
Click Create
You’ll see a screen pop up where you can invite your friends to donate to your fundraiser, share your fundraiser in your news feed, or donate to the fundraiser yourself.
