Awareness News


 

2020 VIRTUAL Bike Ride for Research

Due to the recent COVID-19 outbreak, and social distancing recommendations, the Million Dollar Bike Ride is going VIRTUAL!This will allow our supporters to choose the activities they want to do to raise funds and awareness and complete their goals over time. We would like to use this opportunity to have ...
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Donor Fair Raises Thousands for LGDA

Since their daughter was diagnosed with GLA in the summer of 2018, the Thomas family has made the 3 hour drive from their California home to Stanford for her treatment more than 2 dozen times. When Cece, now 2 years old, was diagnosed, Mr. Thomas' coworkers rallied around the family ...
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Rare Disease Week on Capitol Hill

Rare Disease Week on Capitol Hill (February 25 - 28, 2020) brings rare disease community members from across the United States together to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators. We hope to have patients and families from across the country ...
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Birthday Party Raises $5000

On July 29, 2018, the family of Adrian Santos hosted its second party to celebrate his 4th birthday and raise awareness about kaposiform lymphangiomatosis (KLA) and money for the LGDA to support research efforts. Once again, Adrian's great aunt Linda Sutherland organized the event. Activities for the kids included face ...
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Finding Help and Support

Finding the LGDA was a lifeline for Tracy and her family ‘Feeling that you belong somewhere - helps.  Knowing that you can talk to someone that understands - helps.  Being able to share your experiences so others can learn from it - helps.  So why is it still the case ...
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#LGDAwareness Day 2018

The LGDA and its worldwide partners, LGDA-Europe and Alfie’s Trust, invite you to participate in the 2nd Worldwide Awareness Day on Sunday, May 26, 2018. May 26 was selected for the awareness date in honor of LGDA Founder Jana Sheets, who was born on that day in 1974. This year ...
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