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 to help. When he was invited to participate in his
» Read moreRare 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 joining LGDA Director of Patient Programs Lisa Klepper in representing
» Read moreWe want to thank Team LGDA & LMI and all of you who supported them in the 2019 Million Dollar Bike Ride. Including matching funds, the event raised more than $60,000.00 that will go to important research of GLA, GSD, KLA, and CCLA! UPDATE: On August 22, 2019 the Orphan Disease Center issued its RFA for this funding cycle. The
» Read moreIt’s time again for the Million Dollar Bike Ride! Now in its sixth year, this effort from our community has directly funded 10 research projects focused on our rare lymphatic diseases. In addition, the requests for proposals for research have identified other worthy projects that LGDA & LMI have funded through other channels. Every dollar donated to reach our goal
» Read moreThe 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 a great night of fun and laughter to support the
» Read moreOn 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 painting, animal balloons, crafts, and a Mad Scientist demonstration. Cleveland
» Read moreAfter 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 about her background in pediatric care and why she participated
» Read moreFinding 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 that after being diagnosed with a rare disease you are
» Read moreThe 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 we have invited medical professionals to share with the patient
» Read moreOn 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 at TCH, Dr Ionela Iacobas, hosted the exhibit for vascular
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