The LGDA Wisconsin group is holding its eighth annual fundraiser, this time a professional improv comedy night by ComedySportz Milwaukee. Wisconsin events have raised more than $130,000 for the LGDA so far. For more information or to sign up, visit http://weblink.donorperfect.com/ComedySportz2018. See the LGDA Wisconsin Facebook page here: https://www.facebook.com/lgdagolfouting/ Register now for ...
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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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After being diagnosed with GLA, this Warrior set out to become an advocate for others like herself. In June she participated in Family Advocacy Day, sponsored by Speak Now for Kids, on Capitol Hill to highlight the importance of children's health care. Leeya even interviewed Dr. Jennifer Arnold to learn more ...
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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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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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On February 24, 2018, Texas Children's Hospital hosted an event at The Health Museum in Houston, raising awareness for rare diseases in observance of the upcoming Rare Disease Day. The LGDA was one of 35 rare disease advocacy organizations represented at the event. Medical Director of the Vascular Anomaly Center ...
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